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.

May12th.Org – the go to website for Fibromyalgia Awareness Day next week


Fibromyalgia Awareness Day 2015

Fibromyalgia Awareness Day 2015

A couple of weeks ago I received an email from a website called May 12th. You can visit them here.

The reason that I’m mentioning them today is four fold.

Firstly the blindly obvious fact that they are bothering to promote next week’s Fibromyalgia Awareness Day. I’ve been doing a few things myself which you can check out here. Not much but it is a start.

Secondly they are putting together a list of of events which mark Fibromyalgia Awareness Day. You can see them here https://docs.google.com/document/d/10Gi4ZR_2DMv6TxlQOMBdYpCHDbRwTCVHmVilZnk9naM/edit. It is a Google document which means that anyone can edit it. So we would be very grateful if you could update it with any events you are involved in, on or offline, which mark FMS Awareness Day. It would also be great if you would share this is family, friends and all members of the fibro and chronic pain community.


The other reasons is that the site itself does not limit itself to just fibromyalgia but also provides information and awareness about a number of closely linked but very much ignored medical conditions such as Gulf War Syndrome , Multiple Chemical Sensitivities and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is great to see an awareness site with the blinkers off and looking at the relationships between medical conditions.

The final reason I would love it for you to visit the site, and share it, is that it is not written by an overmighty NGO but rather by us. People who live with, and care about, our medical conditions and health. For me this is the future of healthcare and wellness in the long run. Not the tinkering about with a system with does not work for us.

PS If you have any FMS awareness resources you would like to share please feel free to use the comments box below to share with our readers!

Fibromyalgia and arthritis blogging. What ever happened to the fibro blogging community?


Yes I know an odd question for a blog which covers fibromyalgia and arthritis in some depth.

But let me explain (and ask for your help).

Fibromyalgia blogging

Fibromyalgia blogging

When the wonderful (and wacky) world of weblogging came into my life about 10 years ago it seemed that we could not move for citizen journalists writing on any and every subject that took their fancy. I was told about one blog which covered the history of the headgear of Roman Catholic priests before the Second Vatican Council.

But those days seem to be over especially in the whole area of healthcare and fibro in particular. To some extent this is due to the rise of social media like Twitter. Though I’m not certain how much insight you can get from 140 characters. But it does seem that there are far fewer blogs active than there were five years ago.

The reason I started thinking about this was by accident really.

A couple of days ago a lady called Catherine Manning dropped a link to her excellent blog about fibromyalgia and arthritis called “Old before my Time. You can check it out by clicking the link here.

Now I used to read Ms Manning’s blog on a very regular basis but realised that I’d not done so in a couple of years. Indeed we even published a cross post from her a few years ago. Indeed that applied to a lot of the blogs that I used to follow.

Which brings me to the reason for this post. What should I be reading online and where can I find it?

Please feel free to share the blogs you read (or even better the blogs you write) in the comments box below.

It will give both my readers and myself a great opportunity to find out what is going on out there.

And maybe it will help to prime the pump of the arthritis and fibromyalgia blogging communities.

Thanks very much in advance!


Pain and Fibromyalgia – Where does it hurt?


Acupuncture and fibromyalgia

Acupuncture and fibromyalgia

As we all know fibromyalgia is a very painful medical condition. Indeed it is the symptom which gets the most mentions in a lot of the research we have conducted over the years.

In particular members of the fibromyalgia community have localised as well as “all over” pain. Indeed people with fibromyalgia often have severe headaches and women have very painful periods.

But in this blog post and poll I would like to focus the area of fibromyalgia pain which could be referred as “tender points”. Or , put another way, parts of the body where people feel pain when pressure is applied. This is also called Allodynia.

Most often these pressure points will be found:-

  • back of the head
  • area between the shoulders
  • front of the neck
  • top of the chest
  • outside of the elbows
  • top and sides of the hips
  • insides of the knees

but of course their are others.

The aim of this blog is to allow our readers to share a bit more about their tender points. There are two ways you can help. Firstly it would be great if you could take the poll below.

Secondly we would love it if you could share how you treated the pain and the tenderness in the comments section below.


You might also be interested in some previous research we conducted into treatments for fibromyalgia here.

 

RobinKayeSkinner I would love to say I was successful at treating the pain but it is all so temporary that is like a blip on the radar Just so painful some times just cant move and some days bed ridden..

Life with Fibromyalgia. Tips for living with Fibro from People with Fibro!

Fibromyalgia Awareness

Fibromyalgia Awareness

A few months ago we ran a very successful discussion on our Facebook Page, called FibromyalgiaTalk, entitled “What advice would you give to a person who had just been diagnosed with fibromyalgia?”. We then covered some of the responses in a blog post which you can read here.

The responses were amazing both in terms of quantity and quality so we decided it would be useful to run a similar discussion asking for tips you might have about living with fibromyalgia.

Firstly I’d like to say thank you to the 250 people (so far) who have replied since we started the conversation on Monday. So we would love to share with you a few of the tips . It would be great if you would care to share any of your own in the comments box and the end of this blog post.

“Find a doctor who knows and treats fibromyalgia. Get lots of sleep. Ignore everyone else’s expectations of you and slow down on life. Rest, drink lots of water and TRY to stretch daily. Your friends and family will all give you ideas on what you should do to feel better–it might get annoying—just smile and know they are just trying to help! Hope this helps!!” was great advice from Jennifer!

Brittany was simple but to the point ” Reduce stress as much as possible, take hot baths and time for yourself”

Wendy was very sensible “I had to learn to forgive myself for not being “me” any more, most days I manage it! My usual advice still stands, be kind to yourself, learn how to pace and use the NO word when you need to x”. Another talked about pacing “When your having an almost pain free day and feel good , don’t push yourself because you will pay for it a few days later , sometimes with days of pain …”

One reader shared this great idea for a birthday present “Ask for gift vouchers for therapeutic massage for birthdays and Christmas it hurts a bit at first but you feel so good afterwards. Best present ever x”

Tricia was very practical “Natural Vitamin D3, make sure it’s D3, about 30-50,000 iu a week will make a tremendous difference. Most fibro sufferers are unable to absorb normally and are deficient. Magnesium is good. Take fish oil to go with the D3 and take K2. They enhance each other. Also, heat helps. Hot baths, and extra blanket, and warm sweater. Massages and chiropractic care are definitely a help. Yoga and exercise on your good days. Lastly, rest and reduce stress because these are our biggest triggers along with the weather. Rain is evil. Lol! Take care of yourself.”

And Shell talked about “Do your own research. Believe in yourself & write all of your issues down.”

Which, of course, is one of the aims of this post. So as we said earlier what should be added to this list of tips?

Please use the comments section below to share yours.