163 thoughts on “Pain Management – A discussion blog from PatientTalk.Org”

1. I have sensorimotor peripheral polyneuropathy from an unknown inflammatory disease. I also have fibromyalgia and was diagnosed with lupus in the past but the drs are unsure of this diagnosis (?). I have numbness, tingling and spasms in my feet and it’s traveling up my left calf. I have tried heat, which helps some, but I have to be careful of possible burns. I’ve tried Voltaren gel and this works for a short time. I’ve noticed foods rich in fat and sodium tend to make the neuropathy worse. Moderate cardio exercise for at least 30 minutes a day that doesn’t involve a lot of stress on my feet, such as a recumbent bike, is also helpful. When the pain is very severe, Ive found a terrific rub called “Max Freeze” and it takes away the pain for about an hr or so, especially if I have a hard time falling asleep. I feel this disease did control my life when I was first diagnosed and for the first few years after. I became depressed and felt as if I couldn’t do anything I enjoyed anymore. I didn’t go out anywhere or socialize with anyone. I was miserable. In the past few months I decided I needed to take charge of my life and change my way of thinking or I would be consumed with misery. I changed my diet and lost a few pounds, I changed my attitude and felt more myself. I’m still working on the rest, but I’m a work in progress. I was relying on a dr to fix me to make me have less pain and realized I can’t just rely on the dr to do that or medicine to do that. I need to also take charge too. That’s my advice for anyone going through chronic pain. It’s easy to get caught up in the pain and fall into a depression. Most drs are so loaded with patients and we all want that individualized care that we deserve and pay for, but unfortunately we don’t get it. if there’s something we can take care of on our own, we just have to do and not wait for a dr, I can’t wait for a dr to make my pain go away. They’re not with me at night when I’m crying and trying to find some relief and can’t. I have to figure it out for myself what makes my pain better for me, and for me it’s a pain rub I bought at the drug store or just plain heat.

2. I’ve been having an issue with my TENS unit~my body seems to get “used” to it, and after a few weeks it stops relieving my pain.  I need to “take a break” from it for at least a couple of weeks, before I get any noticeable pain relief from it again.  Has anyone else experienced this?

3. Hi I have fibromyaliga and RA I got diagnosed at 27 yrs old I’m now 30 in its taken a toll on me I 5 end to isolate Alot in just stay in my house or in my bed room the pain is almost everyday a 9 some days a 10 I take pain meds but it don’t seem to work I tryed therapy a couple times it made my body hurt more I see everyone talking about the tens I will see if I can can thar machine at home well god bless in I hope and pray they find a cure

4. verge1978 I was on Lyrica and it did nothing for the pain and made me extremely tired. I have fibromyalgia which already leaves me fatigued and all I did was sleep. Nothing I have tried has worked on me unfortunately.

5. I never thought of trying pain management. I’m going to ask my dr at my next appointment

6. You should just go to your regular MD and see if he/she can help. Or find a new neurologist. My neuro doctor never questions me about symptoms. Good luck.

7. jhannamarie Arthr What medication are you on at the moment?

8. Arthr DDD is what they told me, I’m working on getting a steroid shot for the pain but until then I use medication. Physical therapy is what they have tried. It seemed like it just got worse. So I continue to take my pain medication & I do some of the exercises but nothing else can be done for me. While I’m waiting.

9. My mother experiences excruciating pain, at a particular area of her back, throughout the entire day.  Her doctor has told her that it is the result of a case of ”shingles” she previously had in the exact same area.  Has anyone out there experienced a similar situation?  If so, how are you treating it?
   -Regards.

10. Hi there,
    my name is Eileen and I have lived with Fibromyalgia for about 8 years now. 

    I have gone through periods of being able and unable to work because of the pain and debilitation of this condition has in the past been very variable and i have had periods of being very well controlled.

    Unfortunately, without any change in my lifestyle or medication I have now been off work for over 18 months and have found NO medication that will alleviate my pain. I do currently take Gabapentin 1200mg 3 times a day which is supposed to help keep neuropathic pain in check. I have stopped taking all analgesics and anti inflammatories as quite frankly I wasn’t feeling any benefits at all and didn’t see the point of taking drugs if they weren’t helping.

    I have tried:

    ANALGESICS
    Paracetamol
    Co-codamol
    Co-proxamol
    Voltarol
    Morphine (both oral and patches)
    Tramadol

    ANTI INFLAMMATORIES
    Naproxen
    Ibuprofen

    FOR NEUROPATHIC PAIN
    Gabapentin
    Pregabalin

    FOR DISTURBED SLEEP
    low doses of:
    Amitriptyline
    Nortriptyline

    and occasionally Zopiclone

    Along with the Gabapentin I currently take 40mg of Nortriptyline at night.

    My pain has never been worse. It is relentless and I’ve gone from walking miles with the dogs and working in a busy nursery environment with young children to being barely able to walk (i use 2 stick now). I struggle so much with daily tasks – simple things like brushing my hair and peeling and chopping veg.

    I recently attended a pain clinic and have been given a TENS machine which really helps me to be a bit more mobile. It masks the pain in my lower back and pelvis when I am walking and I am able to go a bit further, and bit faster and in a bit less pain. I also use it on my upper arms and shoulders and on my wrists as these are the other areas where I get the most debilitating pain.

    The pain clinic also equipped me with techniques for relaxation and meditation and set me limits for things such as standing, walking and sitting in one position in the hope that I can dessen the fluctuations of bad days/good days. The aim is to stabilise these swings, get myself into a more stable pattern and consequently reduce the overall pain.

    I’ve tried going to the gym and swimming – this worked wonders for me a few years ago and I reached a stage where I could really have a good workout.

    Unfortunately in this current phase the more I tried to do the less I was able to do to the point where I could barely get out of bed and needed to lie down after even the simplest and most routine tasks. I had physio sessions also but the physio discharged me because I was literally grinding to a halt.

    Gradually with the TENS machine, really focusing on pacing myself every day I am able to get out a little bit more. I am sometimes able to block the pain from my mind using a couple of meditation/yoga techniques in order to get to sleep. I have been told that there are no more drugs or therapies that I can try or explore and that it is just a case of living with and managing my pain with the techniques I have got. I looking at doing a meditation/relaxation course run locally by a Buddhist. It’s costly but I am really interested in the theories behind the techniques and know that I can improve myself in these areas.

    I also changed my diet completely earlier this year, cutting out all the things that ONE book suggested might contribute to fibromyalgia symptoms, and adding in foods suggested that might help to alleviate the symptoms.I must confess that I don’t feel in any less pain, I still struggle with sleepless nights and the consequent stupor and falling asleep in the days, BUT i lost 2 stone and do have more pep and energy even if it is in small bursts.

    I don’t know what the future holds but I do know that I have done and tried ANYTHING and EVERYTHING to reduce my pain and improve my quality of life. For now I continue with pacing myself, using my TENS to get out for short periods and do little tasks, using the relaxation techniques, being in control of my super healthy diet and for the main keeping a positive attitude which means enjoying what I can do rather than reflecting on and bemoaning what I can’t do.

    To everyone out there who lives with pain and/or an invisible condition my best wishes go out to all of you. Take care and remember that you are not alone,

    Eileen

11. TerriBloxomHouse Does Lyrica really help with the pain? I have asked about Lyrica but then they said that Gabapentin is the same thing. I have MS too. I’ll tell you my doctor has me on 15mg of morphine 1 every 12 hours. There are times though it doens’t seem like enough so I’ll take another one which screws me up at the end of the meds. I take the tramadol which the morphine, only 1 though so I don’t hurt my liver to much.My hubby tells me that I need to go to pain management where they are more understanding. I guess I’m his first MS patient even though he’s just my regular doctor. At least he listened to me where my Neurologist didn’t. I would like to know how that pain pump works & if it helps you!! I hope it does!!!

12. Michelle_Virdee Robbo97 Hey Michelle my doctor has me on 2400mg of Gabapentin. It doesn’t work for me but he said to still take it. I started not taking as much since I take umpteen million other things. I know that’s not real but it feels like it.

13. nannajowilson Nanna I got to tell you I don’t have diabetes but lately my feet (soles) hurt so bad tjat I don’t want to walk on them.I’m sorry for your pain & I hope that your pain goes away or that you manage it so well that you don’t feel it.

14. BrianDHouse Thank you Brian for your response & aplogize on how long it’s been for my response back. I need to ask my dotor about this tens then thank you.

15. JacquiTolson THank you for your response JaquiI haven’t been on here for awhile. To be honest I don’t remember what I had said. I know that I had went to some page & put down a comment but I coudln’t remember which one & today was the first time I have gotten any notifications & actually went to the page !!! I again thank you & apologize on how long it’s been.

16. Thank you Debbie for your response. ShoI haven’t been here for awhile cause I forget where I go sometimes. I need to start doing Yoga. I need to find some on the internet since I really dont have the money. I’m gonna try. The pain was mild compared to now, and I have my really bad days & good days with it. I need to look at my account since your telling me me about Brian. Thank you!!!

17. iamwill TerriBloxomHouse  I have m.s and was diagnosed about 9 yrs ago and until recently ive been able to live with the painand problems ive had  but lately im in pain all the time my neurologist  seems to think there is no reason for me to be in pain he says nothing is different on my mri so nothing has changed I am feeling worse and things are getting worse for me I am at a lose as to what I need to do or how to deal with my problems… any suggestions would help im taking avonex I started out on copaxon and also tried one other one cant remember the other one seems my memory isn’t doing so well either these days either

18. I have MS. Pain is something I have lived with for so long. I have tried drugs (legal and illegal). But works the best is not to over work myself and do yoga daily. I agree with Brian, I really use narcotics.

19. I use my TENs unit regularly. I find it truly helps my back and leg pain. Mind you, you do have to know a little about human anatomy before you go sticking the electrodes just anywhere. You should consult your doctor prior to starting and which unit is best for your situation. I’ll swear by it…I have Primary Progressive and it’s better than addicting myself to narcotics.

20. I have MS, diagnosed in 2003 about 2009 I started having low back pain, I went to physical therapy, steroids then on to pain management, I have been moriphine, Norco, fentanyl patches, you name it ,I also tried a pain pump trial that ended not working for pain and they left a leak in spinal fluid s o had to go get that patched! My pain management Doc has given up and I have nerve pain in my back  that affects my quality of life! What now, I can not live the rest of my life in this pain! Any one have any relief with something I have not tried, I would like to get back to my life!

21. I have MS, 2 slipped discs removed, stenosis in the spine, osteoarthritis, osteoporosis and have had 2 knee replacements. I am 51 and the only reason they diagnosed me with Ms was because the MRI scans on my spine showed lesions, even though I had suffered with various Ms symptoms for about 10 years beforehand, including incontinence etc. I have a brother who has had Ms for 30 years so I guessed I had Ms but just couldn,t get my doctors to listen.  anyway you can imagine how much pain I am in every day, just sitting is painful and I can,t get enough sleep because I can,t lie down easily without it making my pain worse. my advice to you is physiotherapy, no matter what or how much pain I am in I try to do my exercises every day, I find if I do the exercises it hurts like hell but is much better afterwards and if I don,t exercise I stiffen up and get more pain from the stiffness.  It is important you get good physio advice from a specialist centre, I went to a rehab centre for 6 months after my last back operation to get me moving again and guess what, on a good day I can even ride my horse again .. brilliant!  it has been a long slow painful 3 year battle since rehab but at least I have some kind of life back. as regards medication I have been on mega doses of morphine but that just makes you constipated and doesn,t get rid of the pain. I take pregabalin for nerve pain, I find quinine is best for leg spasm, but the best pain killer was given to me by my pain management doctor: nabilone, it works on all pain and is brilliant, it is a cannabiloid drug and not all health authorities offer it but you have every right to it if you press your doctors. Hope this helps. X

22. I take gabapentin (400 mg) for MS neuro-pain management.  I call it the “fire ant” feeling.  It gets worse during extreme cold or hot conditions, or when the weather changes drastically, with lightening occurring.  I have to take all of my meds at night, before bedtime due to the cognitive disfunction I suffer from; taking them during the day and spreading them out makes it worse!

23. iamwill Michelle_VirdeeRobbo97     I have been getting RF treatments.(Radio Frequency nerve burnings) Sounds scary but works awesome! But my MS makes my nerves overactive and what should last 6 to over 15 months have been lasting about 5 months.I love it but can’t have it done that often.No side effects except a burning for a few days after.I really wish I could have them all burned from top to bottom! You are almost to the RF stage  with the nerve blocks,I would go back to your Pain management docs and ask about this.Again I love them and I just wish my nerves wouldn’t grow back so fast!! I am doing this because I have severe allergies to most of the meds and I am not about destroying other organs in my body with the meds. I have been diagnosed with MS since 94 and been playing these deadly med games for 19 yrs.I had got the onset of tardive dyskenisia from gabapentin and got off it before it became irreversible so I’m just saying I have tried it all and love RF I was  fighting my MS w/o meds Just a cpl for anxiety and therapy for mental and pain management and pt. Just living a miserably painful life  :/  I hope this helps.GL
    P.S These laptops suck!

24. I am having extreme pain in my knees, was diagnosed with OA, wondering if anyone on here has experienced this

    • GiGi9  I have RA, but extreme knee pain in one of my symptoms. I currently receive Orthovisc for it.

25. I have neuropathy nerve pain in the feet as I suffer from type 2 diabetes. because i suffer from nerve pain I find it hard to walk around. therefore going for walks to lose weight is impossible. but I did go to a physciotherapist a few years back and she helped me with exercises in the pool you only need to do these exercises for 20 and trust me you start to feel muscles the next day. one day I thought i’d be clever and do an hours worth well I couldn’t get out of bed the next day I literally had to hobble to get to the toilet i can laugh about it now. but the pain that I suffer from now is worse than when I first got diagnosed and I didn’t get told what to expect so i’ve walked into it blindly and in severe pain. I take medication and pain killers endone and i’m waiting to see the pain clinic to see if they can help, so i suggest for those who have just been diagnosed get a referal from your dr now to get in  to see the pain clnic because it takes a long time and by the time u get to this point you’l be thanking me. well for those other people out there please right a comment whether it be brief or long as it will help someone else in the long run. take care each and everyone that is suffering this horrible desease.

26. Hmm, I’m new here and having a bit of a bewildered feeling as I learn how to navigate this forum. Please be patient as I get the hang of how this forum/web site works.

27. I suffered and suffered for years with pain, fatigue, memory, coordination, both types of IBS, G.I. Issues—so many symptoms I could list …I went through Insomnia, then the “Sleeping All the Time”—Never Feeling Rested…I actually had a Neurologist say these words to me “You’re not a baby anymore, and you need to stop sleeping so much!”…Really?  I  hadn’t thought of that—JUST STOP—what a Novel Freakin’ Idea…I went through numerous doctors not understanding that “It Wasn’t a CHOICE”…
    I would “Literally” Fall Asleep “Standing Up”…If I didn’t get “Enough Sleep at Night” or, if it was “Nap Time” and I tried to “Not Sleep”, the body aches would come “FULL FORCE” and, I would either fall asleep standing up or, the migraine and nausea would come, then the vomiting, then I had problems sleeping because I was so sick…I would take 3-4 Hour Naps, and I would still feel like I hadn’t slept in 3 days when I got up.  No matter how much I slept at night or during the day, “I Never Felt Rested”.
    The last prescription medicine that I was on was “Cymbalta 60 mg/2 x days.  It did help with the pain.  However, I “Gained a lot of Weight” and became “More Fatigued”.  The Cymbalta “Did Not Help” with the migraines and nausea associated with what my body felt was “Lack of Sleep/Needing a Nap”.
    In April 2013 I started taking ALL NATURAL PRODUCTS  “Plexus Slim & Plexus Accelerator” in hopes of losing weight.  Not only have I (and am currently still) lost 39 LBS. and 6 Inches off of My Waist and EACH Thigh, it also helped with my Fibro and CFS.  By the 4th day, I wasn’t taking naps.  My pain was down.  I was able to “Increase Activity Without Flare Ups”.  I Do still have flare ups but they aren’t as often or as intense.  The Fibro Fog is still there more than I’d like, and I still occasionally have “Coordination Issues”…I will take these “Minor Issues” any day over what these illnesses were once like.

28. I wonder if a person with a spinal cord injury would be welcomed here?.  I hope so.  I was injured 17 years ago and have a history nearly as long (16.5 yrs) with chronic pain.
    I tried Neurontin twice about 16 years ago, but both times could not handle the extremely “loaded” feeling. Never got used to it as predicted. Only recently have I become willing to try Lyrica. I’ve only been taking it a lil more than a week this time, this is after trying it for a week a couple other times when I decided it wasn’t helping me enough to warrant the high cost. I don’t know why it seemed to help a lil more this time. But it is. I will check back in in another 5 days or so, to let ya all know if I can stick with it. And also if I can stop taking the opiod medicide that has not worked all that well, it’s just the only thing that has helped at least a little before the Lyrica.  I hope this does not come across as advertisement. It ain’t. 
    Please let me know how folks feel about having a person with a spinal cord injury in the forum. 
    Thanks
    Robbo

    • Robbo97 I’m not a mod, but I don’t see why not – pain is pain. I find that narcotics don’t work very well on my nerve pain either, plus they give me rebound migraines. I am also on way high doses of gabapentin and carbamazapine and I’d like to be on less. One intriguing thing that I got from my brand spanking new pain clinic dr (just met him two days ago) was infusions of lidocaine under the skin…they basically push a whole bunch in there and let your body absorb it. Evidently many with nerve pain find it very effective. Another was THC…but that is dependent on where you are and your personal feelings about it.  For me, if it will work, it’s a lot less scary than some of the other stuff I’m on.

    • Has anyone tried alpha lipoic acid for nerve pain? Or,Acetyl l carnitine ?

    • Michelle_Virdee Robbo97 
      Thanks a bunch Michelle, I replied once or maybe twice to your post. It seems to have disapeared right before my eyes. I’m still getting used to the quick quick super fast darn keyboard on my new laptop. lol. The lyrica has made me a little bit jumpy ta boot!. so it’s possible I accidentally hit some not yet discovered key code by accident. I got happy fingers that quickly hit keys without my permision!… it’s taken some real sinsere trying to finish this post.. Peace..

    • Michelle_Virdee Robbo97  
      Hi Michelle,

      I have chronic nerve pain in my lower back, I take the max dose of gabapentin  and h ave taken from fentanyl patch to oxy moriphine with no relief. I have had a couple of procedures hoping to deadened the nerve endings but after two weeks it was back worse than before. Can you tell me more about the  lidocaine? I am in pain all the time and looking for an answer to this pain!  My pain management doctor has given up on me! I am 41 and just want to get back to my life! I have MS so that seems to complicate everything!

      Thank you!

    • Hi there, there is no reason you shouldn’t be here, because like the other person said, pain is pain! I have MS, and I have severe nerve pain in my legs and arms! I’m currently using methadone for pain management until I get the pain pump put in, in November. I’m on 10 mg every 6 hours and though it helps some, it doesn’t last long enough. I started out taking tramodol, and then I moved to the Fentanyl patch which I was on 100 mcg patches and I would put one on, and wear it for 3 days but would put another one on a day and a half later and wear that one for three days, so I would switch one out every day and a half. That always kept some pain medicine in me, but it didn’t help, I was eating percocet like candy! I then went on the methadone and I started out with 1 every 12 hours and then they switched me to every 8 hours, and now I’m at every 6 hours. It’s still not lasting me but three hours at most. I tried the lidocaine infusion, but it didn’t seem to help me at all, and the side effects during the infusion were awful! I’m waiting now for the pain pump surgery which should be in November, hopefully. I had to wait until the surgery that I just had for a hernia to heal so that they can implant the pump into my stomach muscles. I’m hoping this is going to help. I’m going crazy sitting in the house all the time because I can’t drive because of the methadone. It makes me so tired that all I do is sleep, especially when I have to take a percocet on top of the methadone because it doesn’t last long enough. I hope this helps someone else who has a lot of pain like I do. I’m also on lyrica as well as the other medication. Please feel free to reply to this post, especially if you want to chat some more. Please feel free to contact me. Good luck and God bless

    • TerriBloxomHouse  
      Your situation sounds identical to mine except, I did the pain pump trial and it did not help me and they left a hole in my spinal cord so fluid was leaking and caused horrible pain in my head and I had to go back to get the hole patched.  Has the pain pump made a difference for you? Looking for pain relief!

      Thank you- Andrea

29. Sorry hit the wrong button. I had a bad reaction to the gamapton, so am afraid to take Lycira. Has anyone ever had Lycira and does it work well. And does anyone know if it effects your emotions?

    • I have taken Lyrica for the past year and it has been a life saver! I take between 150 to 525mg a day when things are bad. I take them for severe hip, knee and back pain associated with OA and fibro:-)

30. I had to an emergency c-section to save my little one. I told the doctor doing my epidural that it really hurt and the doctor did not listen. After my surgery I told a nurse that it was hurting a lot and she came up and ripped the epidural out of my back which I was laying on. Ever since I’ve had back problems and none of my doctors will listen to me. Then this year I had to have emergency surgery to repair a hernia and when I woke up I could not feel my left thigh. The doctors did not start looking into what may be causing this until 4 months after my surgery. I have nerve damage to the leg from the surgery. I have been put on a lot of nerve medicine, but I keep having a bad reaction. I either break out in hives or it effects my emotions so bad that it effects my family. I have asked for other options and have been denied. This week my doctors but me on a new medication call Lycira, but was told its in the same family as gamapton

31. If you have just been diagnosed with a pain disorder DON’T PANIC. 
    The first thing I would do if I had it to do all over again is certainly accept some immediate but limited and simple medication. Then I would find a second opinion as to the cause of the pain. Treating the symptoms without knowing the cause may make it hard for even the best of doctors to find the right treatment for you.
    Once you have an accurate diagnosis find a doctor or team of practitioners who support a biopsychosocial treatment model. Your whole life will need to be tweaked: hobbies, family work, exercise, lifestyle, income, relaxation, sleep, attitude, housework, friends, finances. Your treatment approach needs to reflect all of this; painkillers and surgery alone are rarely the solution to chronic pain. 
    Look at things like massage, diet, meditation, swimming, reduced workload, self hypnosis, adjusted goals, changes in sleep patterns, family counselling, pain management groups; these things will help more than any opiate.
    Be accepting of change. Be patient with yourself. If you have a type A personality treat that first: it will be your biggest enemy. Learn to let things go.

32. I reacted to my pain by having too many surgery’s. My back fusion did not  relieve any pain. I suppose having my knees replaced helped my knee pain, but now i have ankle issues.  I know that if I would loose weight, i could help relieve pain, especially ankle. I have used acupuncture, acupressure, facial release massage, and medication, I take Ultram & rely on Vicodin for really bad moments, Advil, Tylenol etc, no relief. My earliest memory of pain when I was thirteen & trying out for cheerleader. After each session, or practice, I was unable to walk. I lived my next twenty years thinking if I could get into better shape, I’d be pain free. I would take Darvon before Aerobics class. When family doc diagnosed Fibromylagia, I was ashamed, it sounded like a label I didn’t want to wear!

33. I suffer from PHN (Post Herpetic Neuralgia) after having Shingles four years ago.  The only relief I get if from taking Percocet & Lyrica, and that is just a temporary relief.

34. I lost my Fibromyalgia pains…..after 40!!!!! years….with Biofeedback.Zero pains anymore….and I spread the word.F.B..Twitter…Els Helps to Feel Better….thank you for linking my page and Mission…

    • Els Helps to Feel Better  what is Biofeedback please?

    • It’s a trainingsystem behind a p.c. with a therapist . You learn how to work with your body and after a time your body takes over the system automaticly. No medicine…no pain coming back, because your body takes over the new system. Awesome, great…a.s.o. No more pain after 40 years….

    • What kind of pain do you suffer from?

    • All over my body, most legs, Fibromyalgiapains

    • Fibromyalgiapain= 24/7/365

35. Hi, I’ve been living with severe Fibromyalgia pain for 20 years.  I’ve tried most Rx painkillers, muscle relaxers, anxiety pills, antidepressants (such as Cymbalta),  Physiotherapy, massage, chiropractor, accupunture, extension board, exercise, diet etc.  The only things that work for me is a slow release painkiller and just do things alittle at a time.  Ex – only mow the front of lawn, with lots of breaks, do some weeding, rest, trim maybe 2 small trees, break, never over 3 – 4 hours a day.  Same as inside housework, laundry, vacuuming, one thing a day unless I’m having a really good day. Haven’t been able to work for 20 yrs and insurance company will not allowed you to volunteer anywhere.  Rediculous!!  Volunteering gets you out of the house, meeting new people and doing something ‘to give back’.  And it’s ‘something different. I also use a rub A 535 no odour and just found a spray (which if you’re really tender & hurting works much better, it’s called DEEP Relief – sprain & strain relief, touch free, from the makers of DEEP Cold.  If anybody has ANY SUGGESTIONS, please let us all know.   Thanks in advance Deborah M.

    • Look on FB
      Els Helps to Feel Better..
      I have fibromyalgia…but no pain anymore…..Zero, !!!

36. I have been diagnosed with fibromyagia and use a mix of medication/tens machine/ personal pain management to help with the problems associated with fibromyalgia, i.e. muscle stiffness and pain, fatigue, anxiety caused by persistent chronic pain and sleep problems.  I take a couple of codydramol tablets every morning, and 2 amitriptylene tablets every evening, round about half five, to help with side affects of the pill, i.e. grogginess in the morning.  Through the day, I use the tens machine if needed and routinely use the tens machine just before going to sleep at night.  I find the tens machine very very helpful.  It combats the pain while using it, blocking pain signals from reaching the brain and though when I stop using the tens machine, the pain may still be there, it is at a much lower level and helps psychologically, by allowing ‘time out’ from the pain because with chronic pain, comes an extra side effect, i.e. stress and anxiety caused by putting up with persistent pain.  I would definitely recommend using a tens machine for anyone with fibromyalgia certainly.

    • Yes, this can help. We have a lot of patients where tens is not working. If so…I lost all my terrible pain after 40 years!!!!!!, with Biofeedback…

37. I’ve Had Back pAin For Over 20 Years. Finally Found He Best PT(Physical Therapist) And Personal Trainer In Annapolis, Md. Let Me Know If You Want Their names

38. I would like to say that the mayo clinic offers some realistic information regarding chronic pain,chronic fatigue ,fibromyaligia,osteoarthritis all of which are associated with chronic – severe debilitating pain .

    • Where can you find the mayo clinic?
      Is this in the uk??

    • Misscheekywalls I live in British Columbia, Canada but I have heard of The Mayo Clinic.  It’s located in the United States.  Boston, Mass?? not sure, sorry.

39. Thanks for this information about pain management and thanks for all of the comments about people’s different experiences. This has all been very interesting and helpful. Maybe I missed it, but I haven’t seen anyone comment about using p-stim (http://www.pstimus.com). I have heard that it is effective, but I am nervous to try it out. Thanks!

40. a)      What is the primary medical condition which causes you or your loved one pain? The primary medical condition I have was called Migraine. I did have Classical Migraine symptoms, dialated pupil, sparkles, oil slick colored fractals, nausea, slurred speech and extreme pain. What made them frustrating was that NOTHING worked that the Dr.’s threw at it and I was beginning to be treated like an outcast, a complainer and even a drug seeker. I did not know what to do. Then I stumbled on the results of one of my MRI’s and it said I had Arnold Chiari I Malformation. I asked the Dr. to tell me what that was and he said not to worry about it, that it was an “incidental finding” and not to worry about it. After a month of throwing more drugs at me, I was first sent to a pain clinic. This is when I was diagnosed with Occipital Neuralgia. I began getting nerve blocks and at times cryogenic therapy. It would work for a couple days and then the pain would come back. At that point, I got really frustrated and told my Dr. I needed answers. He sent me to see a Neurosurgeon who after looking at all of my films, said I needed decompression surgery because what was happening was that the malformation was pinching my Occipital Nerves causing the neuralgia. It was a gamble as we did not know how far gone the neuralgia was. One of the Neurlogists I was seeing told me that if I had the surgery that he would not see me as a patient anymore because he thought the surgery was “junk science” I had the other neurologist on board and the pain specialist so I decided to do it. It was a very painful surgery and recovery. But I had 3 years without a severe migraine. How long since your diagnosis? I was diagnosed with Occipital Neuralgia in 1999.

    b)      What impact has pain had on your daily life? Since my surgery, I am so disabled by my migraines with the occipital neuralgia pain and without, that I am on disability. There are periods of time that I cannot get out of bed. I have to rely on others to get my kids to their activities. I feel utterly at the will of this pain.

    c)       What treatments for pain have you used? Nerve Blocks with Lidocaine and Steroid, Rhizotomies, Decompression Surgery and Laminectomy, Cryogenic Therapy, Botox and a boatload of drugs and supplements. I also went to a migraine/pain clinic in Ann Arbor that had me stay 27 days on an IV as an inpatient while they tried out treatments until we came up with a plan. I also got them to refer me to all my Dr.s for when I got home. It is good to have Dr’s with similar views towards your care.

    d)      How effective were these treatments? So far I have gotten some relief at times, other times it has just not worked at all.

    e)      How do you see the future of you journey? I am always hopeful that there will be “something” that will help manage the pain.

    f)       If you could give any advice to somebody who has just found out they suffer from chronic pain what would it be? stay positive and hopeful. Be patient, but assertive with your doctors. Research treatments. Bring your questions to your appointments. If the Dr. does not have an open mind, keep seeking Dr.’s until they do. If you are prescribed something, educate yourself about it. Get to be good friends with your local pharamacists. Sounds weird, but they will know you almost better than your doctor because multiple Drs will be in charge of your care. Keep a diary regarding your symptoms and keep a list of your drugs and supplements, list what doesn’t work and why, list your allergies. Hae a dr set up your Abortive Therapy as a Protocol for the ER.  Now I show up. they put an IV in, give me all of my drugs and I am done within 3 hours. It also allows you to feel in control and they are less likely to treat you badly as you can trell your Dr. how the treatment went. Also, try to stick with the sae hospital every time. Don’t give up!

41. How long can it take to diagnose MS ?

    • It really depends on your own body, and your neurologist! I was dx’d with MS in may of of 1997, my dx started in August of 1996, after a severe exacerbation, however I had symptoms on and off since I was 18. For some people it can take much longer. I have heard of cases that have take up to ten years to be dx’d! I wish you luck in your journey, and God bless! .

42. DORSAL STIMULATOR IMPLANT!!!
    In 1987 I fought Guillian’ Barre Syndrome with paralysis from the waist down for 18 months.  It left me with neuropathy pain for many years.  Of course I tried the gamet of all the different drugs known to doctors for relief.  None worked!  In 1995 I was Dx with RRMS and severe neurpathy in my hands.  Two years of playing the drug game and finally it got so bad I had to wear nitrile gloves because i could not handle anything touching my hands. or my feet.  I found that wearing anything synthetic made me burn worse.  I switched to 100% cotton socks and fabrics and leather shoes which was very helpful but did not stop the constant burning. Then on top of the MS progressing to secondary progressive state I got RSD in my right foot and leg.  Now is went the hell set in and I was in constant pain, even when I slept I was aware of my pain.  Nothing worked for relief.
    After 7 months of taking morphine my body adjusted to the narcotic and the pain specialist suggested oxycotin.  I said “no way”.  I told him that the only time i felt relief was when there was static in the atmosphere before a bad storm or if I was in a large casino.  I could actually feel the electricity counter acting against the nerve pain.  He laughed but said “why haven’t you told me this before?”  He asked if i’d tried a tens unit which i had but the pain was becoming so wide spread that i was using three of them.  Then he suggested I try a DORAL STIMULATOR IMPLANT surgically implant into my spine.  
    Amazing!!!  Relief!!!  The last day I took I took any pain narcotics was the night of my surgery.  I have two implants.  It is basically like a tens unit only it is put under the vertebrea and lays against the spinal cord.  The battery last ten years and is also implanted inside the body.  You have a small remote with a satellite pad the you place over the  battery to turn it on and adjust how much stimulation needed to block your pain.  One set of lead wires sit in my cervical area that i control for my hands and arms.  The second one was implanted in the lower thoracic are that i can  adjust for my feet or from the groin down to my toes.
    These are used for many types of problems and pain.  I’ve met people who fought migraines so bad they laid flat for months who are now living normal lives.  I met a man who had tremors so severe from Parkinson’s Disease that he couldn’t feed himself and hardly walk.  After his surgery you would not even know unless he told you. My husband was Dx with Parkinson last year and we have already made contact with a specialist who will implant the stimulator in the brain to control the tremors.  It is important to know that in this situation there is a “window of time” that this can be done.  
    Please take an hour and look on the internet about this implant.  It is from Medtronic.  www.Medtronic,com 
    I would advice anyone who fights chronic pain that disables your life to look into this stim implant.  It was worth it for me and gave me my life back.  No it is not a cure for any disease but well worth the surgery and healing time.  This is not a new medical treatment.  The first one used was in the 1940’s.  They have improved them over the years and made many improvements and continue to each year.  I know you are having the same thought I had, “what if it does not work for me?”  The implant has to be implanted and worn with the battery on the waist for 4-5 days to prove it works before any doctor will put it in permanent.  You have nothing to loose and much to gain.
    If just one person looks into this and tries it and it improves their life then i will be happy I shared my knowledge of it.  Also please post it so other will learn of this amazing device.  
    God bless all those who get up everyday and say “I will not give up.  I still have the fight left and I will not let this or any disease ruin my life.”  ♥♥

43. When I read your post, I thought it was my post, and someone was responding to it. I actually had to read the whole post before I realized that it wasn’t my post. I was also dx’d in 1996/7, and the reason I say both years is because the only reason I didn’t get my official dx was really just a technicality. So anyway, I have severe pain in my legs due to nerve pain. Most of the lesions I have had have been in my spinal column, 2 in my cervical spine and 1 in the thoracic spine. I now have degenerative disc and joint disease in my back and neck as well. So naturally I have been looking for something to help with the nerve pain beyond drugs. When I start to get to the end of my rope from pain, I grab my tens unit and attach one just above the outside of my my ankle, above and just behind the ankle bone, and then I attach the other lead to the knee, just below and to the outside, to where it is to the left of my knee cap on my left leg and then to the right of the knee cap on my right knee. You get the idea, I’m sure. I use the left side lead for the left leg and the right side for the right. I can put it on either a high or low setting, or any other settings I need, depending on how much I am hurting. I like to put it on a low setting and take some percocet, tizanidine, and baclofen and take a nap. At some point I will wake up and turn it off and I am fine at least until the end of my nap and someone longer I try to use the module II mode, because it fluctuates in intensity on both leads. Try it, I think you might even find it enjoyable. I hope this helps you, good luck with your MS, and God bless

44. I have had MS since 1996 and got my dx in 2001.  Neuropathc pain started in 2011 and begain taking 1 Vicodin per day.  Gradually, my pain increased.  I went to a pain mgmt clinic and they did a Ketamine Push IV and it took all the pain away for a while- meaning it was indeed nerve pain.  It took several tries of different meds (due to unwanted side effects) and am now on a regimen of Lyrica bid, Oxycontin tid (but I usually take it bid) and Norco PRN (usually tid).  I won’t take more Norco than qid because it could be habit forming at that level, so I just use a heating pad if I had already taken 3 for the day.  I will ask my dr. about a TENS unit!  I used it 2 yrs ago when I broke my foot!  It worked wonders, but when the nurse was dressing me as I got out of the shower, she plugged the unit in me and it had been turned all the way up.  I screamed, she screamed, she dropped the TENS box, and we all laughed harder than heck!  Wondering if TENS will work for MS.

    • I have MS also, I was dx’d in 1997. I started having neuropathic pain around 2004, and I was put on tramodol twice a day, and it worked great for a few years. around 2009 I started having more pain, but I was able to stay on the same dose of tramodol, by using exercise and mountain biking as a form of pain management, and that worked great until I had a motorcycle accident in 2012 and injured my knee! I was laid up for several months due to my knee injury! Shortly there after, I had an exacerbation of my MS symptoms, and everything went downhill quite quickly and my pain increased tremendously! I stayed on the tramodol, but added a dose of percocet in the afternoon to my regimen. This however doesn’t seem to be helping with the pain. I was sent to a pain management clinic and due to my fear of becoming addicted to the drugs, my Dr suggested the pain pump delivery system. This is my next step! I am still waiting for the insurance company to approve it. I’ll post again with the results as soon as I get the surgery!

    • By the way, I tried the tens unit, and it didn’t work for me! It distracts your body while it’s on, but once you turn it off, the pain starts right back! I’m not saying it won’t work for you, so please don’t hesitate to try it. This is just my experience with it. I hope this helps you, good luck and God bless!

45. I have suffered with CP since a work accident back in 1991, in the last 22 years I must have tried most treatments medical & non medical from nerve blocks, to osteopathy, heat packs to tens machines, paracetamol to Oxycontin and have found that a combination of  osteopathy and Oxycontin have been the only things to lower my pain to a level that makes life bearable.
    I still have days when the pain levels go above and beyond but that’s because I’ve normally pushed the limits and paid for it, but I find sometimes one has to give those boundaries a push or you would sit around and vegetate.  I have damage to C5,6,7 &T1 plus torn ligaments in both shoulders, Hip pain with one already replaced, a stretched ligament in my left leg causing my foot to lean over and I’m walking on my insole.
    I’ve taken part in pain management and lost weight and reduced and even stopped meds but to no avail, I ran a CP  support group  for 5 years in my local area but found myself doing everything so had to pull back, but did learn a lot at the time.
    My biggest problem at the present time is getting my GP to prescribe the Oxycontin as he has a big problem with this type of med still I’m dealing with it and he is conforming after my Pain Specialist agreed with me and now i’m back on it but at a lower dose that works as well as I require.

46. It is confusing selecting the right
    tens unit. I don’t see the evidence that it works for ms patients
    with my pain symptoms.

    • I had a friend that let me try his tens unit just when my nerve pain was starting. Within 5 minutes of using the tens unit my pain was gone. I then saw a PT Dr. Who said the tens unit helps a whole bunch of patients. It is worth a shot, they are not that expansive and is better than medicine.

47. Has anyone ever heard of using subutex for MS pain management?

    • Happiness1433 What is that?

    • Its just like suboxone which helps detox from opiates but my husband uses it for MS pain. Im just curious to see if anyone uses it….

48. i am suffering from ms i go to pain mamagement in order to get my pain meds every month i have to go for eperdurals if i dont go then they wont give me my pain meds

    • happiness999 Why do you have to do an epedural? And what is it cuz what I am thinking of is what they used on me with my labor of my kids.

49. ***I have extreme knotted pain for 2 solid weeks! and over a year now!  firstly ill start form the beginning short… i was hit in the head by a metal garage door that broke loose during 50 mph winds Had to go through  speech and cognitive and physical therapy i still with the” Fibro ~fog”to follow thoughts as i have post contusion memory disorder! thought to speech cognition still since 2001 !   I  was diagnosed with fibromyalgia. Though,  more than 15 years ago My daughter is 15  i was 33 and i had a full hysterectomywith female Cancer !i  The numbness burningand asleep limbs ,feet ,hands, andpinched nerves ,nervousanxiety, inability to sleep and  fatigued beyond!   Yet i was a hairdresser and worked hard and had a very large clientele  for 25 years!  On disability SDI since 2005 there was a work related back injury and i could not even sit  !   i began falling then around that time! 
      *** 3 years age could not barely walk with a cane ,  never a curb or stairs falling a lot much bruising from it as wellthen a breakdown from being up for a week straight in extreme pain  apparently 2 reasons did not deal with my husband of 20 years walking out with next door neighbor and marrying her after being  dysfunctional  I believe  the main reason  physician taking me off Norco abruptly  because of a supposed prior friend stealing my prescriptions and blamed it upon another until i ind her ex husband investigated it per myself!                                                                   not  taking me off it slowly!??  ”  I did  NOTwant to take it it …but it helped me clean my house! ”  followed by 2 solid  Months of repeated every few minutes full blown on anxiety attacks!                                                                                                                                                                                                                                                                      ***ThisThis  past year diagnosed with optical neuralgia  by a neurologist left base of skull thedeprokote   AKA:  i since take (Divaloprex) 750mg .  taking this i no longer  have the virtigo and helps with mood , focus sleep “at times”                                                                                                               ****Though  the entire both sides of neck mostly  (L) sided with the optical neuralgia upper arm under muscle aching  . spasms in left shoulder and neck roll on tennis balls in hope the knots release No physician and to physician  to physician to does not do any good physical therapy Exercise only helps for about a hour and most of the time exacerbates the extreme golf size knots and in neck muscles as hard as  the bone ?  hips go out of place in severity as the tendons are being pulled out of place on the hipbone by the  knotted surrounded tissue have to at times for a few days be worked in place painfully and diligently!  numb on outside aching severe internal deep!  the  Bursae (L) &(R)  hips and shoulders! ! I haven’t seen this descriptive of my   present condition in all upper body neck to  shoulders , shoulder blades and throacic now that i was hit in Dec 2012 still complications! Also,  all around to the front breastbone!  others  on patientslikeme ,Mayo clinic UCLA much other   outsourced ?researched information! . i have read up on over time! Nor do i get any?? Nor  an explanation from any Dr.?                                                                                                    Any help please!!!  would be more than gratefully more than imaginable appreciated ! thank you ______MsLifes2good ( regardless)

    • lifes2good Where do you live: what country?

    • lifes2good Sorry. from the research centres you are in the USA?
      You might want to see if you can find an osteopathic practitioner. Someone who does hands on therapy.

50. A forum or a Facebook page. I find a lot of useful information about MS and the support of others who are going through something similar. Sounds like a wonderful idea!

51. Degenerative Disc Disease Since 2008 5 herniated discs in thoracic region of my back as well,  prior to that 3 herniated discs in the thoracic region of my back in 1998
    after 1998 – had back surgery, worked for 10 years, then boom like clock work i had 5 herniated discs, scar tissue and DDD that makes it inoperable, i have run the gammut of medications
    Gabapentin
    topimax (current)
    one that started with a Zonisamide
    cymbalta (current)
    MS contin  (current)
    hydrocodone
    carbadopa/levadopa
    oxycodone
    trileptal
    methadone
    dilaudid
    depakote
    it seemed gabapentin @ 800mg 4 times a day and oxycodone 15MG 4 times a day was helping but i was in a masters program trying to rehabilitate myself and could not concentrate on the material so i asked to be taken off of it so i could concentrate
    went 9 months without narcotics
    tens unit no longer working, i have to crank it all the way up to even feel the effects of it.
    they are going to try the alpha-stim on me http://alpha-stim.com 
    to see if the microcurrents work better 
    can’t seem to find the right mix of meds to calm the pain even the ms contin stopped working at the dose i am on 15mg SR 3 times daily
    I am really enjoying reading all the other ideas in the comments, and believe there should be a forum for this, is anyone interested in this type of thing, I would not mind starting something up if there is not already on.

    Matt

    • nukeum That’s what they said I had was degenerative disc disease I was like what the heck is that. So I do my best to keep my back straight but it doesn’t always help. They basically said it’s bad posture. I spent my whole life making sure I kept my back straight but I don’t know.

52. Hi I suffered an accident 8 years ago that started mine off, which has been slowly progressing over that time, I have epilepsy as well. I tryed tens units that didn’t work and so many pain killers I can’t count. I am now waiting to see if surgery is an opption that may help alittle.

53. I’m trying the tens unit now. I’m hoping this will work for me. I got it for my back pain, which is due to degeneration of my discs and joints. I never thought of trying it for my nerve pain in my legs. I have been dx’d with MS since 1997. I have had MS since I was very young, but I can definitely trace the optic neuritis back to the age of seven. I had started having trouble with my left eye complaining about a headache behind my eye. I was dx’d with lazy eye, but that doesn’t explain the headache behind my eye. I believe it was optic neuritis. I believe that the MS was activated by the mumps virus that I had when I was five years old, as does my neurologist. So, as you can see, I have been dealing with MS for a long time. I am 42 now, and I have started to progress very rapidly. My legs hurt so bad that I can’t sleep at night. Have been taking ambien to sleep, but I would rather not have to take it. I like to dream at night, but I don’t remember any if I am dreaming. So, I hope this helps me, and I can stop taking the ambien. Thanks for the suggestion!

    • TerriBloxomHouse Good luck, My pain used to start in my middle back went up and into my right shoulder. I can treat it know with the tens unit. I hope it works for you.

    • Well it seems to work like a charm, but not sure if it was my medicine or the tens. I had already taken the meds when I tried it, but I’m not sure. I’m sure it played it’s part, but I can’t be sure what part it played. I will have to try it tomorrow before I take my pain medicine, then I can see just how much it will do. I do however know that between the pain meds and the tens unit, I was able to go a lot longer than usual, so maybe it did do more than I thought it did.

    • TerriBloxomHouse What is this tens?

54. Does the tens unit help relieve the
    burning and prickly pain? Also part of my leg gets numb.

    • Loubiz76 I believe the whole principle of the tens unit is to take your mind off your other pain by the electric stimulus. I would give it a shot. I was having a hard time walking one day when one of the pads fell off. I had a friend reattach it while it was giving stimulus and I stood straight up and my walking immediately improved.

    • Loubiz76  no it does its makes it worst i use it to  the tens unit and it doesnt do anything for my pain.

55. I have ms and suffer from nerve pain. I’ve tried just about everything. I was wondering what a TENS machine is?

    • Inpain Tens units send electrical pulses into your body. My unit has four electric pads that I place around where my pain is.I then adjust the level of stimulus to a comfortable level. Look up tens unit on the internet they are fairly inexpensive.

56. I have nerve pain in my legs and feet. I’ve tried lots of remedies with no relief in sight. What are

    • Inpain A tens unit sends electrical pulses into where you place the pads. I have four pads with mine and I place the pads around where my pain is. Tou can then adjust the unit to how much stimulus you want. Look up tens unit on the internet they are fairly cheap.

    • I have recently started to use a circulation booster. It’s the one advertised on tv. You put your feet on the pads. Does this operate the same as the TENS unit?

    • Inpain I have not seen the circulation booster, so I do not know for sure. The unit is battery powered, It has four pads that stick to your skin and they have wires from the unit going into the pad.

    • Thanks a lot for the info,I will go on line and try to find out.

    • Inpain Good luck, I did not think anything could stop the nerve pain but the tens unit has worked.

    • I have researched the circulation booster and TENS and I think it’s pretty well the same. The c booster also comes with pads. How long have you been using the unit and how long did it take to see results?

    • Inpain It took about ten minutes the first time. I have gone as long as 45 minutes though. It always seems to calm the pain and make me forget about the nerve pain.

57. I have had MS since 1993. My nerve pain used to wake me up in the middle of the night and I could not go back to sleep. I went on two different Narcotics but I did not like the side effects. Now I use a “TENS” unit for my nerve pain. I need someone to place the pads on my back but after about 30 minutes of stimulus the pain is gone. Also there are no side effects.

    • I have nerve pain in my legs and feet. I have a circulation booster which also comes with a tens unit. I attached the pads to my legs but got no relief. I’m waiting to hear from the chronic pain clinic

58. I
    have had MS for fifteen years and now I can no longer work anymore.
    And dealing with pain has been the hardest thing for me to deal with.
    My legs burn, and tingle 24/7. Now during the day and even worst
    they are going numb. Pain pills don’t help very much either anymore.
    My poor walling ability has changed my live so much and I can’t
    enjoy going anyplace anymore.

59. a) ms (dx 2012) and fibro (dx 2005). Symptoms started 2003. 
    b) Unable to participate in a lot of events. Often quite cranky or tired – less patience with family. Fatigue results in inability to keep up with normal daily events. When pain gets severe can become quite frustrated and have a lack of interest in daily activities.

    c) Mediation, guided imagery, diet, medications, distractions.
    d) Reasonably. In the case of nerve pain for MS they are pretty good. The general pain less so. Still I can keep content.
    e) Continuing much as it has. Eventually I’ll have more disability, but I’ll also learn to cope better.
    f) Live in the moment. When you think about having to be in pain like this every day for a long time or infinitely it seems impossible to deal with. Also find something(s) each day to be excited and happy about.

60. I have been dx’d with MS since 1997, but I have been dealing with it most of my life! I had juvenile MS, we believe to have been brought on by the mumps virus, but wasn’t dx’d until I was twenty seven years old. At that time MS was a disease that was not a common disease. MS research was just beginning to become fruitful, and with a number of famous people dx’d with MS and coming out about it. , the disease was gaining more publicity. Over the years I have developed neuropathy in both of my feet. I was put on tramodol, which has worked wonders for the nerve pain in my legs and feet. I have also been on baclofen for spasticity. However, for the last several years my nerve pain has been getting worse, but the last six months it has increased to the point of being intolerable! I can’t find any relief from the nerve pain! I’m currently on tramodol every six hours as needed, 150mg lyrica three times a day, 20mg baclofen three times a day and 30mg at bedtime, 2mg of tizanidine twice a day and 6mg at bedtime, and since going to the emergency room on Saturday, I am on 2mg of hydromorphpne every four hours as needed for pain. I just can’t seem to find any relief from the nerve pain. I need a new cocktail of drugs, or something else. I don’t know what! I will see my neuro Thursday, and he may send me to see a pain management clinic

61. RSD/CRPS for the past 13 years. I have tried many many medications, which didn’t do much but knock me out. I have a slightly different approach to diet then the comments below. I have had a lot of issue with keeping on weight, part of the disease, so I have a lot of dairy in my diet. Dairy, natural sugars, and protein. My pain management consists of regular exercise (which is more stretching than not), medical marijuana, CoQ10 (supplement that helps with swelling, tremors, muscle cramps, my dosage is up to 1200 mg daily), caffeine (even though it’s considered a ‘no no’ for chronic pain), my beloved TENS unit, and peppermint oil (applied topically). The best advice I could give… keep moving. Even when you’re in tears, keep moving. My first few years, I was just trying to keep my head above water, had been fitted for a wheelchair, wasn’t working, and didn’t even leave the house on a regular basis…. it was a very long road back. I have upped my game in the past few years, not concentrating on the pain but the functioning. Moving to a warmer climate has definitely helped keep me moving, as well as desensitizing. With CRPS there is a lot of surface pain, if the wind blows the area hurts…. so I’ve been purposely exposing more skin, and taken to washing with a washcloth. It does really hurt initially, but the sensitivity lessens the more you do it. Keep on keepin’ on.

62. I have had MS since 2001, with four bulging discs and a pinched nerve. I have been on Nuerontin, darvocet and vicodin. One thing they all have in common is that they all work for a little, but there side effects can last forever. I also have been diagnosed with Osteophorosis and Arthritis so my pain levels can be extreme at times. I have decided not to take any more pain meds, I experimented with cannabis and nothing works better than it, I have not taken any pain meds in well over 5 years. I also changed my diet and eliminated all dairy, my body has less inflamation since I quit dairy and as a result less pain. Or more tolerable. I have also been on morphine and oxycontin but I just do not like taking the drugs because of what they have done to me already. If anyone has any natural remedies my ears are wide open. I am not sure if any of you have heard of H202, but I started mixing it with aloe vera and applying directly to where it hurts, and it gives significant relief on the spot of pain and then the pain fades.

    • Fiaz Khan My daughter has been taking Aloe internally to treat migraines, been working well for over 5 years! Will now have to google the H202. Awesome!

63. I have CRPS/RSDS down my right side from my head to my toes I was diagnosed 4 yrs ago. This had now stopped me from working & doing alot of everyday tasks including showering.. I suffer chronic nerve pain, muscle cramps I have Fibro, IBS, osteoporosis depleted immune system & a host of other issues. I’ve gone through physio, chiro,acupuncture & TEMS but as they all involve touching the skin I can no longer use them. I’m now left with prescription pain meds. Tramal increased my anxiety 10 fold so now on OxyContin. I use wheat bags on my muscles & they help alot. I think it’s worth trying all options available & don’t forget to look at natural remedies & keep a healthy diet.

64. If we consider that there are so many painful conditions, and if tradition pain treatments have not been successful, then I suggest with my 37 year of experience, that integrated health care must be considered. I believe that with extreme self discipline and an open mind, patients must consider the mind (nervous system)-body connection. A study was done on 2 groups of patients that had knee surgery. Half had the real surgery and the other half thought they had it. At the end of the rehabilitation period, both groups had experience the same healing. I suggest everyone watch a 20 min segment, @ AWMI.net, tv program for Fri. April 19. I also suggest you watch my video segments on “you tube” ( Peter Luecken ), You will understand the complications of physical, mental and chemical stresses and their effects on the common denominator,the nervous system, to all conditions, including hereditary DNA complications. For more information or to view the whole lecture, or to attend an up coming community lecture  go to: http://WWW.BroadwayMedicalpc.com. Become a Victor not a Victim.  Thoughts > Feelings > Actions > Consequences > Destiny !!! Good Luck, in bettter Health, Dr. Peter Luecken.

65. Can anyone help me get info for Michigan certified card. I have fibromyalgia. They diagnosed me back in 99. Only thing dr does is write prescription for Xanax and hydrocodone I feel like I have a monkey on my back if I don’t take a small part of tablet of Xanax. I would like to sit with a medical marj doc and try to get the right strain and get off meds. I already am changing foods I eat and don’t eat and try to keep active. Ty

    • Keys rat http://www.michiganmedicalmarijuanacertification.com/

66. Hi i was Diagnosed ten years ago ..As i get older i notice my pain gets worse Maybe its a age thing .. I’m on High Dose off MS_Contin .I take it twice a day I hate the side effects I get so tired

67. Anyone tried medical marihuana for Chronic Fatigue Syndrome or Depression? I’ve been reading that certain strains are very effective.

68. Anyone here dealing with chronic pancreatitis? Wicked disease that the Dr’s just do not know much about. I have had it for over 9 years now, just wanting to talk to others who have it to share info with.

    • StaceyHartwell Fields I have not been diagnosed with pancreatitis (yet), but I do suffer from chronic low blood sugar episodes after having a bypass surgery. My blood sugar was going up and down like crazy.  It was a challenge to get medication, because everyone wanted to blame my “episodes” on something else…low protein, drinking too much water with meals, etc, etc…  I saw an endocrinologist and now take the generic version of Precose before I eat, and it has done wonders!!!  Also, have to avoid anything with simple sugars…no alcohol, white rice, white bread, potatoes, or desserts. I have Rheumatoid Arthritis and kind of believe my autoimmune system also attacked my pancreas, but we’ll see…  If you aren’t seeing an endocrinologist for the pancreatitis, it might be a great thing to do.  They will know more than a rheumatologist on this issue.  Good luck!  😀

69. I had.have a multitude of diseases, from sinal tumors (genetic), RA, wanted to test me for MS, hernieatd and DDD ,pain daily 24 x 7 in neck lower back, then went to my neck and head, had what they termed a zap/stroke.  Ran around to a  bunch of docs for 4 months.  All the tests you can think of and was on neurontin(gabapentin) after the zap, vicodin, valium, and tramadol.  Every doc pushed me to the ext specialist.  I threw my hands up into the air, and started researching….there at only 2 facilties that offer the broad spectrum team appraoch to pain management.  I went to the Cleveland Clinic.  I was a day patient for 4 weeks, came out 20 years younger and pain free.  Plus no meds.  Check it ut, big time commitment but life ahead is worht it.  they teach you how to deal with your ;pain, you have every specialty look at you, to the point of psycotherapy and tai chi…wirht every minute of your time.  Talking about docs and meds will not cure you, nothing will…you need to learn what you need to do in life to live pain free or at least the right way to control it.  Good luck all, the 2nd place is Johns Hopkins.   I will not lie they will put you on drug tests.reviews…but it is your program…if you feel they do not help you tell them.

70. I have RA, and was diagnosed almost a year ago. I have had this disorder for 3 1/2 years. Because it was initially palindromic nobody could figure out what the heck was wrong with me. 
    This has most certainly changed me. I now have to think about every move I make, literally. If I sit for too long, painful, if I stand for too long, painful, if I god forbid move the wrong way, PAIN! I have to think about what I eat, and when I eat so I don’t get sick from the MEDs.
    The treatments I have so far used are: Plaquinil(didn’t work) Methotrexate ( worked but my lips blew up like a blow fish), and right now I am on Leflunomide ( not sure if it’s working or not, been having a few rough days)
    How do I see the future? I don’t know. I am trying to be positive, and say I can stay healthy and beat this. The truth is, as much as I try, I’m still in pain. I still don’t feel like me. I would like to believe that one day I will wake up and feel normal, move normally. Ah but there is hope I guess.
    I don’t know what to say to someone newly diagnosed, I sort of am that person. I guess the best thing to say is, you’re not alone there are millions of us on this path together. I have big shoulders, you have my permission to lean on me.

    • SharonWoodward  I have sever RA I am taking enbrel shots every week and thy help me some.

    • SharonWoodward  This is what I am dealing with now as well.  It has been a challenge to get people to see me as someone who is not some sort of a junkie asking for pain meds.  I now have arthritis that has been discovered in 4 of my joints and the bone erosion is showing up on my left wrist….finally…  It has taken me over ten years to be diagnosed, and well, I am still dealing with being treated as a junkie on occasion.  I am on Plaquenil, prednisone, Mobic, and Lortab.  So far, the swelling and pain keeps getting worse, but I am trying to stay positive too.  And my shoulders are sooo big right now from the swelling, I guess I have shoulders to lean on too!  (Just make sure I have my Lortab first…lol)

71. Well I wake up in the morning and its there, I say hello – it does not reply…its with me all day and doesn’t talk to me..only groans and naggs and its still with me when I go to sleep at night and its been like that for the last thirty three years….so?

    • RobertGales  You sound like me. I was diagnosed 2 years ago w/ Fibromyalgia/RA, My symptoms started about 6 years before diagnosed. Medication,trying to reduce the stress and having a loving supporting family,yoga and meditation so far. I have tried going with out medication and found that I cannot. The main thing that helps is that I accept myself and my condition and the fact like you said, it is there every day when I wake up and every night when I  got to sleep. I think it is a life long condition, it doesn’t go away., I just have to deal with it.

    • ChristineHenderson RobertGales
      Thanks for sharing that with me.  I does make me feel better knowing that I’m not the only one dealing with this part of MS. 
      Lou

72. I’m a single mom to two kids and I have fibro I don’t like all the pain meds what is something else I can try that we’ll help with the pain and still function to take care of my two kido any advise I’m willin to try anything

    • Melissa801 Tumeric capsules, get them at a health food store it is a spice and s a natural pain killer!

    • I well try it how does it affect you or does it have any side affects to it

    • Melissa801 No side effects so far! I is a natural spice so unless your allergic I would think you would be okay to take it. I take a herbal pill that has it in it but the tumeric alone would be a lot cheaper. Go to your local herb shop and go to pubmed.gov and look up your disease, there are lots of clinical trials there that could be very helpful! Hope this helps!

    • Melissa801  
      Please check out the tumeric, I read an articele where an 80 year old was up and walking the day after hip replacement and the Dr’s were amazed because he wouldn’t take the pain meds. They found out he had been taking tumeric capsules (8 a day) and was able to amaze the docs with his pain control! Hope all this helps, wishing you a pain free day!

    • Hi Melissa..my name is Rene {naynay} and I to have fibro. I am and have been on meds for yrs however..since loss of job..income..ins..I’ve moved home at my age and..well my mom has been researching fibro big time. I am off ALL DAIRY that’s a no no for fibro and I’m off of refind sugars and eating better. This alone helped but..for 8 weeks now mom has mixed 2 luqid vitamine together and I def take 1 x a day but 2x a day is good . 1 morn 1 night. Let me tell you..the difference in taking the vitamines is unbelievable! I had been in constant flare for 1 yr plus and now I have not felt the all over painful and fatigue. Its. ..ok. one is by. Aloe life called orange papaya. Goes in fridge. The other is by natural vitality called organic life vitamines also. Goes in the fridge. Now we use a shot glass and mix 1/2. & 1/2 of each and chug a lug. I hope this helps. I also have major neck back and hip pain but this does not tough that pain.

    • Ok how is dariy bad because I drink probley a gallon of milk in 3-4 days by my self I do take a daily vitamin 2 times a day and the fibr has been bad on my tummy so I drink these little drinks once a day called YAKULT it is a cultured probiotic drink it has liver and active lactobacillus casei shirota but as far as pain management right now it sucks I don’t sleep at night the pain meds make me itchy rely bad I have a hard time taking them I’m willing to try anything that would help

73. I cowboy through the pain most days. Myfeet bother me from the nimbness in them. They thought I had neurapothy in them. they ran the tests and found it was MS related. I am on gabapeten twice a day.
    If the pain is finally bad enough i can’t cowboy thru i take Tramadol twice a day.
    I find that the more active I am during the day the less the pain and headaches are. Some daysthe pain wins.
    I look at MS and the Pain is “Get busy Living or Get Busy Dying”. I try to live to that most days.

74. I suffer from Gastroparesis for 13 years. I’ve had kidney stones for 9 years. I always have multiple stones in both kidneys. For 6 years now I’ve had neuropathy in both feet & legs. The dr tried 3 nerve blocks & they didn’t work. He wants to put stimulator in spine. They have tried me on around 14 meds. They either make me sick or don’t help. I went for a second opinion. The dr sent blood to Mayo clinic & she found out I have an auto immune disease. She thinks its from getting a flu shot. I have a lot of the characteristics of fibromyalgia but they can’t tell me if I have it or if the auto immune is mimicking it. My body aches like I have the flu every day. Right now I’m on a pain med & it helps control my pain & the achy feeling.

    • Cglass1 My doctors thought that I had Lupus and/or Fibromyalgia, but they found out that its Rheumatoid Arthritis. What meds are you on? I pray that they find out soon what exactly is wrong with you, which auto immune disease that it is.

    • I am on dilaudid. The auto immune is
      paraneoplastic (VGKC AB+). I worked at a nursing home 13 years ago & they made everyone get a flu shot. That’s when my stomach quit digesting. The dr said the Gastroparesis can be caused from the auto immune.

    • Cglass1 I am speechless, I didn’t know that the there was so many auto immune diseases out there. Like Ms. Tammy, I will keep you in my prayers.

    • Thank you. I asked 4 of my drs about the auto immune & the 3 treatment options. They all said they never heard of it & don’t know what I should try.

    • vmjones_3 Cglass1 My group of specialist gave up trying to figure out what other auto immune disease I have  back in 2008. I guess with MS they really are not worried about what others I have. Its frustrating to me. I too took dilaudid for some time then it stopped working.  My meds are always changing. Its crazy and at times really hard to keep up with.

    • TammyKayDeppe vmjones_3 Cglass1 I really need some relief because last week I been confined to the bed. No prolonged walking, sitting, or standing for me. Which is hard, especially since I can’t lay down so I’m constantly shifting positions.

    • I will keep you & @vmjones_3 in my prayers. It took me 4 years to get the drs to listen & figure out I had neuropathy. I am very frustrated with drs. I understand where you are coming from. I’ve tried pool therapy & it helped for while. I had cataract surgery few weeks ago & am now allowed to get back in. All I do is walk around the pool. I did get a TENS unit last week. They tried me on everything from neurontin,to antidepressants, to pain meds. The last pain med morephine caused me to be sick & it took me 6 months to get the drs to listen to me.

    • Cglass1 My feet and legs go numb daily. Its awful. Im sorry you have to go thru all this. I too feel like i have flu like symptoms. I was told over 5 years ago that it goes with both Fibro and MS. So for me its a double dose! I just try to stay positive and i pray a lot. I will add you to my prayer list.

    • Thank you. My feet & legs hurt, go numb. Just standing 10 mins and I’m in pain. Walking makes worse to. My feet and legs turn colors & are usually cold. I had an MRI and they couldn’t rule out MS. The dr gave me 3 options I could try for the auto immune. There is no guarantee that they will even work.

    • Have the Doc check for Sjogrens Syndrome. They will do a biopsy on the tissue from the inside of your bottom lip. It is a rare auto-immune disease found mainly in women, it “can” go after your organs (kidney) causing renal tubular acidosis which is high acidic levels in the kidney causing “kidney stones”.. Sjogrens can also lead to RA.. Better yet why not just “Google” or go on Mayo’s web site and look up Sjogrens for yourself..

    • Have the Doc check you for Sjogrens Syndrome.. They’ll do a biopsy on the tissue on the inside of your bottom lip.. Sjogrens is very rare and is found maily in women around their 40’s.. Google it or go to Mayo’s web site and look it up, you’d be surprised at how closely your symptoms relate to Sjogrens.. The only reason I know is because I have the same issues with my body and kidney stones, I pass many stones on a daily basis and I’ll soon be traveling to U of M in Ann Arbor to see their kidney specialist.. I’m only 34 and they’re talking about dialysis and or kidney transplan because my kidneys are turning into stone from all of the kidney stone formation, they don’t function proprerly..

75. No ma’am, Ms. Tammy, I haven’t tried that. I will look into it. I’m dealing with migraines, sciatica, RA and OA. I have bone on bone in my hip and knees. The migraines have affected my vision, I been told by my doctors (3 of them) to stop driving but my kids are in school and I have to get to the doctor. And I’m still recovering from a stroke that I had not long ago. So right now things is really hard for me. But I will try whatever to get my life at least halfway back to normal.

    • vmjones_3 Oh sweetie I am so sorry you are having to go thru all this. I also suffer from migraines daily. I am allergic to most migraine medications. So i have to use narcotic meds to treat them.

    • TammyKayDeppe vmjones_3 Yes ma’am. I was on Topamax for my migraines but my doctor took me off because they had me nervous and having suicidal thoughts. And my behavior had changed to the point that no one wanted to be around me.

    • vmjones_3 TammyKayDeppe Topamax gave me heart attack like symptoms. Scared us so bad, I was in the Nuros office when i took it and EMS was called to come take me to the hospital. The EKG showed i was having a heart attack!

76. Naynay, I too have Fibro. UGH some days I can barely move cause I hurt so bad. I am trying acupuncture right now to get the muscles in my back to release. they are all locked up. After two treatments i can happily say i got some release. The doctors here in San Antonio, TX seem to think this is the only way to deal with my pain Ect…  what to try none narcotic meds or want to install a pain pump for me ( I am fighting this cause i don’t want to be doped up on meds my whole life) when on some days i maybe could only take 1 pain pill..

    • TammyKayDeppe I apologize, I just realized that this reply button works. Thanks NayNay.

    • Hi TammyKayDeppe. Thank you for your reply. Yup..fibro sucks. I do want to try acupuncture but without ins..income etc..I’m pretty much stuck. I just got on the county program for health yet they don’t or can’t do much for us freebies! I do get 2 of my meds so far free from the manufacture themselves. If u are low or no. income they help. Anyway..I can’t wait for them to come up with a mirical for fibro. I know dairy and refined surgars are a no no so..since stopping those it has helped. Also I posted to another lady here regarding some liquid vitamines my mom started me on about 6 to 8 weeks ago and what a big diff for fibro.

    • What type of vitamins are you on? I’m to the point that I will do anything

77. Hi! My name is Rene..I go by naynay a lot. I’m 49 and I deal with fibromyalgia…also..I need every disk in my neck replaced..then my lower back..herniated..deterioating and buldging disk. I have bursitis in my upper-otter thighs..thyroid..adrenal glands no longer work..on and on. Anyway..I take a lot for pain for many years and its not working anymore. I lost insurance yet get help thru patient assist programs. Any tips for things at home I can do to help relieve the pain..would be great. Thank you so much. Oh yea my meds make it to where I can get out of bed and do small things.

    • naynaysteele Sorry I didn’t see the reply button, but i posted a comment for you.

78. Vmjones3, I am so sorry to hear that your pain is not under control. have you ever tried acupuncture? I just had my second session and i have to say so far it is helping me a lot. I hate needles and never thought I would try it, but my pain was so out of control, I was at my wits end.

79. I’m still trying to find a way to manage my pain. Granted, some days are better than others, but everyday has some level of pain in it. The medicine that I was taking for my Rheumatoid Arthritis had affected my heart, so my doctor are trying to come up with something for me. But all the arthritis medicine that they put me on keep making my heart weaker and weaker. So what am I to do, other than just deal with this pain?

    • vmjones_3  can you not take other pain meds that will not affect your heart. My Mom had a heart attack 9 months ago and they never took her off her narcotic pain meds.

    • TammyKayDeppe vmjones_3 I’m not sure because my body retain fluid so bad. I can’t even sleep laying down anymore because of what’s going on. I have Alot Of sleepless nights like now because of the pain and being uncomfortable from not laying down.

    • vmjones_3 TammyKayDeppe I too sleep up right cause if not my body hurts more. I also take meds for the retaining fluids. might be worth asking your DR.

    • TammyKayDeppe vmjones_3 Yes ma’am, I will. I had to change my diet and everything. I can only have 32 ounces or less of fluids a day. That includes stuff with liquids in it, like soups and jello.

    • vmjones_3 TammyKayDeppe Wow Sweetie I am so sorry to hear this. I will pray your Dr’s can find something to help you very soon. Just a question, have they checked your kidney and liver functions lately?

    • TammyKayDeppe vmjones_3 Going for tests about that on the 29th. And to a sleep disorder clinic also because while at the emergency room a couple weeks ago, they saw that I stopped breathing quite a few times and that was while I was awoke.

    • vmjones_3 TammyKayDeppe  I too have sleep problems, now i sleep with a CPAP every night. if not i stop breathing many times an hour.

    • TammyKayDeppe vmjones_3 Wow, we suffer from some of the same things. It’s not good that you are going through that, but it does my spirit good to know that I am not alone. I am in tears. I will be praying for you.

    • vmjones_3 TammyKayDeppe  YOU are NOT alone. Sometimes I have found that talking to other who suffer from chronic pain helps alot. My family is very supportive, but don’t have to live with my pain level themselves so as much as they all think they understand, they really don’t.

    • vmjones_3 TammyKayDeppe  I truly believe in the power of prayer! I will be keeping you in my prayers. please keep in touch with me. my email is momdeppe1@aol.com if you would like to email me please feel free.

    • TammyKayDeppe vmjones_3 Thank you so much for sharing with me. My email address is victoriamjones3@gmail.com

80. My name is Tammy i suffer from lots of health problems that cause a lot of pain everyday. Just to list a few, Fibro, Lower back pain, MS, Migraines…. the list goes on and on. I would love to know how others are dealing with their pain.