diagnosis of fibromyalgia

1 Comment Posted on Fibromyalgia

People with Fibromyalgia – how well do you feel fibro is understood by the healthcare professionals who treat you?

A growing chorus of discontent suggests that the once-revered doctor-patient relationship is on the rocks.

A growing chorus of discontent suggests that the once-revered doctor-patient relationship is on the rocks.

Yes I know it is a bit of an odd question.

But when I started out in healthcare market research all those years ago many of the people with fibro we spoke with felt that many doctors seemed not even to believe that fibro existed.

For some this made diagnosis virtually impossible.

Has this changed?  To find out we have decided to run a  short poll which you can find below.

If you want to expand on your thoughts please feel free to use the comments boxes below.

Many thanks in advance.


6 Comments Posted on Fibromyalgia

Do you have fibromyalgia? Have your symptoms got worse over the last year?

Fibromyalgia -where doesn't it hurt

Fibromyalgia -where doesn’t it hurt

Over the years we have talked a lot about the diagnosis of fibromyalgia and the signs and symptoms of fibromyalgia.

Today I would like to turn our readers attention to something else. This is the progression of your fibro.

While it is a massive subject I felt it best to put it as a very simple question. “Have your symptoms of fibromyalgia got worse over the last year?”

To get a sense of how it is working out for our readers it would be great if you could take the poll below.

But of course there is a lot more to it than just yes or no.

It would be great if you could share a bit about the development of your fibromyalgia in the last year in the comments section below. Anything you have to share will be of interest to our readers but you might want to consider some of the following questions:-

a) What have been your main symptoms of fibromyalgia over the last twelve months?
b) How have each of these symptoms changed over this time? Are any of the symptoms new?
c) Have you changed your therapy for fibromyalgia?
d) Have you made any lifestyle changes? How have these impacted on your fibro?
e) What is your support network like?
f) On balance are you positive about your future with fibro?

Thanks very much in advance!

 

OneTear As mean as it sounds…pull yourself out of this depression!
I was lucky enough and found a good doctor. The doctor I had seen diagnosed me with Fibro and handed me a 10 page printout, “here you go, read up on it”. That was her understanding of help. Then I found a doctor who actually understood what I’m going through, and he gave me pain medication. He send me to a pain clinic, but when the pain was under control I saw him again. He manages all my medications now.
There are some who don’t understand dependency and addiction. My body depends on the pain medication, but not my mind. Once my pain was under control I picked up my life and I continued to live it instead of throwing it away. I lost over 100 lbs, I had another baby, we adopted a second puppy, and last year we moved to a bigger house with a huge yard.
I learned that giving in to this sickness is your death. You might still be breathing, but on the inside you are dead. I was dead. Now I make sure I manage my medication, and try to live healthy, and just act like the sickness does not exist. I picked up my dreams, and decided that I wanted to live those dreams!
Sure I have bad days too, but I learned to deal with them. I take hot baths in a bathtub that my plumber put in, but I did all the tile work. I have to say, hubby doesn’t like physical work, so I do most men’s jobs around the house myself. Staying active is the secret!!
I caught a pretty nasty bug over Thanksgiving and have been in bed for a week now. I got up today and saw a doctor to get rid of the secondary bacterial infection I have now. Getting out of bed was the hardest thing I have ever done! But I know it will hurt like this only a few days, and then I’m back to my “normal”, which for sure isn’t the norm. I give myself time when I do my daily work. I gave myself over 6 months to tile my bathroom, but I got it done.
My house isn’t spotless, and my kids get pizza at least once a week, but doing things myself, getting the job done gives me a high that powers my life 😉
Last year alone I had my very first garden, and grew my own vegetables in garden boxes that I designed and build together with hubby. I was the one who put a wood floor in hubby’s office, and tiled my new bathroom. I took the car apart after the shop wanted $1000 + for a new AC compressor and fixed the problem myself for about $220, but that included the tools I had to buy. I took the carburetor on our lawnmower apart and boiled it. Now it runs like new again. I learned how to give my dog the necessary shots to make her feel better. I started preparing the dog food from scratch since one of my 2 dogs has bad allergies. I taught my daughter to not be afraid of riding a bike, and I taught my son how to drive a car. The list goes on and on, but only because I decided not to give up.
I hope you understand that your family might never understand the pain you endure every day, all they see is that you gave up! They don’t hate you. They don’t tell you all the hurtful things because they hate you, they treat you this way because they love you, and it hurts them to see that you simply gave up. A part of them unconsciously thinks that you don’t love them, or you wouldn’t just give up!
My advice to you is to decide what you want, and then go and get it!
Find a doctor that will help you control the pain. It will hurt like hell in the beginning, but after a while you will actually have less pain if you work out every day. When the pain hits start stretching those body parts first. Get a muscle relaxer that works for you. Go on walks. Set goals of cooking something really good once a week, and then twice. Plant a garden. There is nothing that gives you more hope than watching your own achievements grow. Just don’t give in!
I had to have a hysterectomy when my daughter was only 2. My doc had to cut the 12 lb sucker in pieces just to pull it out. The hardest part for me was that after the operation I wasn’t allowed to lift my daughter up. I wanted to carry this little thing around so badly that after the first 6 weeks I started to probably over due things a bit, and yes it hurt, but at the same time it helped “me” to heal.
Find what helps you to heal. And don’t accept this sickness to be the end of being you, or it will win. Turn your life around, it is possible!
Ronda Lynn I was Diagnosed with Fibromyalgia in 2007 after 2 yrs of struggling to figure out why I was getting so sick and why I was so sore & tired, they found a 5 lb Tumor(non cancer lost ovaries).  I spent almost a year just laying in bed with my laptop the pain all over my body never went away, They discovered Hyper nerve sensitivity, non stop ringing in my ears, I feel like i’m holding onto an electric fence.  I became so depressed, meds they gave me made me gain 75lbs, I hate mirrors or windows.
my husband & 4 sons Tried to understand, but things soon got worse, eating made me so sick & caused so much pain, 2015 they discovered 2 golfball sized stones in my gallbladder & it was very swollen and needed to be removed asap.
so since March I have been trying to get back on my feet, my sons are all above 18yrs old now, but somehow they resent me getting sick. being in so much pain I can’t do simple thing like doing dishes or laundry, so they do their own.  3 sons still live at home,
* Stress is big time problem & some how I am being blamed for ruining all their lives since I got fibro,  all the depression meds & pain meds I take to try and be the Best Mom I could be for them isn’t enough.
They are mad at me & I feel so alone and so lost.  I have lost all my church friends, because I can’t go out much last 3 years.
Family hasn’t been supportive & doesn’t involve me in gatherings & stuff, Why do everyone I love with all my heart hate me. I didn’t choose this, it just happened.  I gave up my 3 horses, I have purged my clothing and collectives, I am even giving up my dogs, & now gave in to moving to town from a country home I have lived in for 22 years. I have lost everything I treasured & loved. Why? What can I do to get better?
MirandaRSmith a) What have been your main symptoms of fibromyalgia over the last twelve months?

Painful pins and needles sensation in arms and legs, tiredness, going from talking normally to forgetting how to make a simple sentence. Pain in shoulders, neck and lower back. Hot and Cold waves including sweating profusely. Headaches that feel like someone is shoving a needle through the back of my eyeball,  not being able to stand, sit, walk or lie down comfortably or for long periods of time, constipation, nausea  and finally needing the loo constantly.

b) How have each of these symptoms changed over this time? Are any of the symptoms new?

None of my symptoms are new but this year the pain has significantly and the ability to cope with the pain has defiantly been worse. I have had to cancel more and more plans and its very rare to go through a day without 1 nap if not 2. However, sometimes after a nap I am in more pain than before and even more tired than I was.

c) Have you changed your therapy for fibromyalgia?

Due to the fact I  have been at my wits end I have joined the Fibromyalgia action group for support and help to manage my condition. All my painkillers are the same and my doctor wont even see me any more as repeat prescriptions are to be handed in at reception and you are forbidden to ask to see a doctor if you are just there for repeat medication or consultation for the same illness as its a waste of valuable doctors time.

d) Have you made any lifestyle changes? How have these impacted on your fibro?

In Feburary my permitted work ended this meant I no longer had a reason to leave the house and over time my arms and legs have weakened as they were not getting the regular exercise I was getting and making it harder to do my back exercises as a result my health has deteriorated.

e) What is your support network like?

I am a member of Fibromyalgia action group and although have only had my first meeting last month they seam nice. My family after years of treating me like I was faking being ill are now being supportive because they a friend with Fibromyalgia and are starting to understand the illness because of her. My new boyfriend is a rock he is supportive and through the worst of times goes out his way to make each day special to make me happy.

f) On balance are you positive about your future with fibro?

I am really not the painkillers I am on barely touch the pain my doctors don’t want to know and often say what do you wan me to do about it and my health is generally getting worse. The last few months have been so bad at times its hard to keep going. What is worse is that I feel like I have no options and no idea of what I can do to prevent or lessen flare ups.
LokiShine a) What have been your main symptoms of fibromyalgia over the last twelve months?
Pain mostly. Kind of a cop out answer but it’s true my pain killer is at its highest level I’ve been on. The weirdest most problematic pain is one that starts under my shoulder blade, then becomes the pain you get when you hit your funny bone… But for 20 odd hours a go.
b) How have each of these symptoms changed over this time? Are any of the symptoms new?
Pain isn’t new, just the intensity. The funny bone pain is around a year or so old now. My joints have gotten worse and if I lie on my back for more than 2 minutes I get crippling pain in my lower back that makes it so I can’t move. If I lie on 1 hip for too long it becomes agony, even in my sleep my partner wakes up several times to encourage sleeping me to flip over. Some days the duvet on my legs is agony.
c) Have you changed your therapy for fibromyalgia?
At the moment my doctors seem to have lost interest. I’ve dragged myself in crying in agony. Unable to get around the house. Let alone to shops or have anything close to a life. I just have pain killers at the moment as I’m watching myself get worse each day.
d) Have you made any lifestyle changes? How have these impacted on your fibro?
Some times the pain excersies I half manage are. The most I can do for a day. A bath is an excursion that takes planning and is exhausting. I need help with the simplistic of tasks. I wish I could just “acceptx” the pain like my doctors say but it’s the kind of pain I can’t ignore, it demands to be felt.
e) What is your support network like?
I have 2 partners who care for me and help me. Medical professionals don’t seem interested, I’m too awkward for them I guess.
f) On balance are you positive about your future with fibro?
No. I’ve attempted suicide 2 times but apparently I’m quite tolerant to medication. Im in a better place now but the pain is still getting worse. It. Doesn’t. Go away and there isn’t.much life for it left to take from me.
Ponder57 My fibro has gotten worse over the past years even though I was told it would never progress. The overall pain is worse. I have developed more symptoms such as dizziness, buzzing in my head, double vision, osteoarthritis, tingling feet, worsening headaches, and  complete shutdown of my bowels. I have had hearing and vision tests and been tested for vertigo. I’ve had a brain MRI and various xrays. I am about to have a Celiacs test. I have had a CT scan of my bowels. My medications have been increased and I have new ones.
smvmcauntiesuz A) My main sx have been pain, gastric distress, and fatigue.
B) My sx have worsened over the last 12 months.
C) I moved, and have had no medical care over the last year, due to medical coverage issues.
D) I have taken steps to reduce stress, and if I have seen improvement in edema.
E) I have support in my husband and a few close friends, and foremost, I have GOD.
F) If I can get and keep consistent medical care, I have hope for the future of my fibromyalgia.
Leave a comment Posted on Arthritis, Fibromyalgia, Patient Talk

Fibromyalgia Webinar. Melody Aitken introduces her free webinar on Fibro treatment!


Melody Aitken

Melody Aitken

Melody Aitken has very kindly provided us with a guest post telling us a bit more about a Fibro webinar she is running next week.  To find out more about Aitken and her life with fibromyalgia why not check out the links below.

HOW DID I GET BETTER? WHAT IS THE TRICK?

I remember the first phone call I had with Andrea, she was a fellow diagnosed who was managing her symptoms and living the way she wanted. I had one question in my mind; How?

Today now being in a similar situation, managing my Fibro, my symptoms silent, I get asked this question daily. It makes me chuckle, depending on the forum, if I am speaking or running a workshop, people will make a beeline to me, I know what is coming, and before a hi or introducing themselves they will say; “How did you do it? What is the trick?”

Wishing that I could sit down with each person and talk, or answer all the emails in great detail with this question as the subject, it is just not feasible, my time would be consumed. Bring me to this webinar. I will make this question the sole topic, and answer it.

The webinar is not a magic wand that you can wave and poof you’re healthy, but will answer the question, plus touch on the basics I have used personally, professionally, and are increasingly being recognized and used by the medical community, healers, and even fitness trainers. A few of the customizable basics that will be discussed are; individualized treatment plans, perspectives, doctors, alternative treatments, comfort zones, and a few approaches.

The webinar is on Tuesday March 4th, 12:30pm (EST) to 2:00pm (EST). Register at and see you all there.

ABOUT MELODY

Melody was officially diagnosed with Fibromyalgia in the summer of 2006. Rapidly declining in all areas; mind, body, and spirit, she soon found herself in a deep depression. All heightened by the medications prescribed, and the dosages self prescribed out of desperation. It was not until 4 years later, when she was told she would be wheelchair bound by her 30th birthday that Melody took things into her own hands.

Melody started calling the shots for her own healing. With little success found in the “conventional” methods, a more traditional route was explored, alternative modalities. Over the next ten months the pain and symptoms subsided, with the last one being felt in November of 2010.

With the encouragement of her Doctors, and support system Melody began and continues her training in Alternative Modalities and Wellness Coaching to help those who are struggling in their own journey with Fibromyalgia.

Melody works with clients, runs workshops, speaks, and writing a book to get the message out there.

Melody’s goal is to bring awareness that Fibro is not a sentence, but to also help people live the life they want.

MELODY AITKEN

Certified Wellness Coach

Only To Be You www.onlytobyou.com onlytobeyou@gmail.com

Link for the webinar is at https://www.eventbrite.ca/e/fibromyalgia-the-most-popular-question-i-am-asked-tickets-10727059925


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Getting diagnosed with Fibromyalgia. What tests were used to find out if that you have Fibro?

Fibromyalgia and household gadgets

Fibromyalgia and household gadgets

Welcome to our latest fibromyalgia blog on the subject of your FMS and the tests used for  its diagnosis.

The aim of this blog is to find out more about the experiences (and stories) of people who have been diagnosed with fibromyalgia and their friends and families.

One of the reasons for this is the attitude to Fibro of physicians.   Many people with Fibro will be familiar with the saying “it’s all in the mind” being directed at them by healthcare professionals and friends alike.  Indeed there are still some doctors who say the condition does not actually exist.

We should like to focus therefore on the story of the tests used for diagnosis of fibromyalgia. In particular we are interested in the following questions:-

Firstly, have you actually been diagnosed with fibromyalgia yet?

  • Were you diagnosed by a specialist or primary care physician?  Did you find them sympathetic to the condition?
  • What symptoms did you exhibit before and after diagnosis?
    What was your physicians’ attitude to your symptoms?
  • Were you given a “table tilt test”? What other tests were used?
    How would you like to see the diagnostic process improved?

Finally, if you have any advice for other patients or suggestions as to other resources please do not hesitate to add them to your blog comments.

Thanks very much in advance for your help.

4 Comments Posted on Fibromyalgia

Fibromyalgia – How long did it take you to get a diagnosis of fibromyalgia?

One of the first things I noticed about fibromyalgia was the time it seemed to take for a person to

Fibromyalgia

Fibromyalgia

get diagnosed.

We are there for running a poll to try and find out what was the general experience of our readers. The poll is below and it would be great if you could take part.

Please feel free to use the comments box below to share more about your fibromyalgia diagnosis story.  Hopefully other readers will be able to benefit from the knowledge you have picked up during your journey!

 


 

SandyJean Actually it took almost two years.  I kept going back to the doctor for sever pain that did not seem to be in the same place all the time.  It moved around my body.  Finally my family physician suggested I see a Rehumetologist.  After a few visits and trying several medications that only upset my stomach he sent me to see a neurologist.  He tried to do a nerve conduction test and could not get the needles in my back because the muscles were so (threaded) as he called it.  They were extremely tight.  So he started finding my pressure points and found i had pain in 13 points.  That was over 20 years ago.  9 years ago i had to apply for dissability because the pain has become more intense and lasts longer the older I get.  If only a medication could be found with NO SIDE EFFECTS.  I am tired of the weight gain and the stomach upset and the sleepless nights do to medications.  So I deal with it and use only over the counter meds.
MichelleBennett In reply to BobbielynHarrsch.BobbielynHarrsch thats what they probably did to me also
authorKJRoberts I said 6-12 months in the survey because it was 7 months after I had a bad flare that I was diagnosed. I believe it was my first real bad flare. But I really believe I’ve had fibro my whole life. I wasn’t going to the doctor for a lot of other things. I just wasn’t going to the doctor, but looking back, I think I was born with it. So, if that is the case then it was 27 years before I was diagnosed.
BobbielynHarrsch I was going to a clinic for many years, for several health issues, lower back, knees, migraines, neck,  elbows, depression, arthritis, asthma. I finally got a private Dr I could afford, the second year I was with him I asked him to fill out a form for my boss, and he listed Fibromyalgia  as one of my diagnoses! I did not notice it, when I brought the form into my boss, his wife was the one who spotted it and said “You never told me you had this too, what do you take for it, I’m on Cymbalta” When I went for my next Dr’s appointment he said “I thought you knew, it is in your clinic records 9 years back!”