Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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Rainbowsearching 08/17/2013

I was diagnosed with chronic fatigue syndrome when i was 15 and am now 29. When the diagnosis was first made it seemed to fit as i was so tired and achey at the time and some days couldnt get out of bed. However as ive got older ive continued with life as normal without being completely debilitated so dismissed this diagnosis as an easy opt out for the gp. although ive continually suffered widespread pain on and off all the time. I hold down a full time job amd up til now everythings been manageable. However two months ago symptoms flared up and new complaints arised and this led to me being signed off work due to really bad pain in my legs. Doctor checked my rheumatoid levels and all ok. I am due to go back on friday but i seem to be suffering with so many weird symptoms im not sure wether to bombard him with all of them as not sure they are all linked. Having browsed the internet however they do all seem to relate to fibromyalgia. Will list all symptoms and was wondering if anyone can give me advice based on personal experience do others suffer with the same group of symptoms or am i going mad?

Intense fizzing pain right side of my head radiating across the top
Whiring noise in my right ear
Pins and needles in face and hands
Tender neck and shoulders
Body feels like a bruise being poked everytime i move
Trapped nerve like pain in fingers knee and ankles
Restless legs
Right knee gives out when i go up onto myntoes making me walk with a wobble
Feet dont want to go flat to the ground especially in the morning and i cant pull my toes up as feet feel stiff and they ache really bad
Random muscle twitches in arms legs and eyelids
Tired
Having vivid dreams at night and grinding my teeth waking up feeling like ive run a marathon
Joints hurt and feel like theyre swollen but theyre not

Thanks

deleted_user 08/17/2013

well i have fibro and all those systems and most people who get cfs get fibro. Go to dr. you dont need to suffer so bad. Here for you.

Rainbowsearching 08/17/2013

Thanks for that, in a way i feel like a bit of a fraud, i know there are people out there whos lives have been severly affected and yet i still manage to drag myself into work everyday and most of the time i manage to hide the extent of pain im in even from my closest family, im worried no-one will believe me as there is no definitive diagnosis

PeaceN2You 08/18/2013

Some -maybe many - doctors are put off by self diagnosis.

Try going in, putting all of your symptoms on the table, and let the doctor steer you toward a diagnosis. Then if he's not getting it push him a bit in the direction you want and see what he says.

PeaceN2You 08/18/2013

Something else that comes to mind - write down everything you want to tell the doctor, as its really easy to forget some of the symptoms when the list is long.

In the absence of objective testing, a pattern or collection of symptoms can be very important to the diagnosis, so it's important to give the doctor as complete a picture as possible.

Rainbowsearching 08/19/2013

Thanks, i already have a list written out of symptoms as i am bound to forget something lol i dont really mind not getting a diagnosis so long as gp is willing to try treatments that may help, so far he has prescribed NSAIDS for sero-negative arthritis as he is convinced its arthritis even though my rheumatoid levels are normal. Doesnt explain other symptoms though so thinking maybe i havnt made myself clear enough

deleted_user 08/19/2013

I had a difficult time getting a "real" diagnosis for years. They would say that I probably had Fibromyalgia, but it was never official. Although my psych doc had been saying it for sometime also.They were also trying medications for Fibro and the Osteoarthritis. I started a "pain" journal. I kept it for about a month or so before an appointment with Internist. Also kept track of medicine I took and it's effects. After just a few minutes of leafing through it, The Doctor finally "officially" diagnosed me. Just telling them about my symptoms never worked, but showing them helped tremendously. Now all of my Doctors accept it and treat me accordingly. But on the other hand I also find that since the diagnosis, they tend to blame all my aches and pains on the Fibro and the Arthritis. I have to be vigilant and be my own advocate. I worked off and on for years after my neck surgery, but the constant pain has taken its toll. I hope you get some validation soon.

deleted_user 08/19/2013

Sorry, I was going to add, that you could have Arthritis. There are different kinds. I have osteoarthritis, although I have tremendous joint pain, it does not involve swelling of the joints, just degeneration of the cartilage and connective tissue. I was tested for rheumatoid arthritis also and that was negative. But I think keeping a journal is the best. It not only helped the Doctors but it helped me understand what was going on also.

Rainbowsearching 08/19/2013

That's really interesting, so does osteoarthritis not show up in bloods either? I don't have swelling but was recently signed off work due to the tendon in the back of my knee becoming very inflamed, it was rock solid could this be a result of arthritis? Very confused all I know is I hurt, I feel like my body is rebelling against me and I'm fed up with it

deleted_user 08/19/2013

I honestly cannot remember if they did any blood work. Many issues came up around the same time. I did have a bone density test years ago. I also have degenerative disk disease in the spine, so i guess through all the MRIs, CAT scans and other assorted testing it just came up. I don't know your case, but my body feels like it got hit by a semi 98% of the time. It sounds like you may have a few issues. I believe you should discuss as much as can with your Doctor. I actually talk to my nurse longer than my doctor usually. But I have the same nurse every time I go in. Good Luck on Friday.

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