No test

[nothingwrong]

Even though I've been told FINALLY I have fybromyalgia i get really anxious that it's something else . Does anyone else still question their diagnoses or am I just being a hypocondriac?

[fenbadger]

1 YES

2 NO

I hate my laptop sometimes. It's just thrown away a whole reply.

My GP freely admits the medical profession doesn't really have a handle. Partly why we get referred to rheumy and neuro and MRI doesn't always show something. It sounds to me like its a spectrum thing and there's no one simple treatment or cure. Now you have that diagnosis you can get on with dealing with it. Maybe adjust the way you do things to make life easier or try diet/ exercise medication I do tai chi to keep muscles and joints moving and as much cycling and walking as I can - and I've noticed it's getting less. Cheese sandwiches might be a bad idea and we've already discussed nightshade family. It takes a while for meds to settle down and I hope you find a treatment that works for you. There is a belief that it's reversible - I'm not so confident on curable

You've already got well in to the site so I hope you feel at home and can get answers.

One of the best things is positivity. Stress makes anything worse and fibro's no exception.

Lots of gentle frankincense scented hugs.

If the answer looks odd, it's because I replied half then edited the other half so as not to lose it all again.

[nothingwrong in reply to fenbadger]

Thanks, yes I am stressed at the moment, which is making my chronic neck ache unbearable,my backs burning and my ear and side of my head have a burning ache(did you read my post after my hair cut) and now I have a sore throat I actually just want to scream.

[fenbadger in reply to nothingwrong]

Yes. I have no experience of that but I see you had replies which did. I'm afraid perseverance is necessary with fibro among other things.

There's nothing wrong keep questioning things. There's also other things associated with fibro, like IBS. They're not guaranteed to have a link. It's a matter of patience and people around you having some understanding.

[Colegg]

My husband questions my diagnosis all the time I have just learnt to accept it but my husband thinks there's more to it as drs won't investigate anything if your labeled with fibro my neuro didn't want to know once he saw fibro written in my notes but each day it becomes easier to accept that it is fibro and you will find ways of dealing with it and work out what makes you worse and what makes you easier hope this helps x

[nothingwrong in reply to Colegg]

I try not to go to the gp all the time or I would be moving in there. I just get very self absorbed and stressed with worry as I am always questioning fybro, it's been 10 years now after my baby it all started, and I'm still here so I just carry on and wait and see what the next day will bring x

[TheAuthor]

Hi nothing wrong

I sincerely hope that you are feeling as well as you possibly can be today? I know exactly how you feel. I question my diagnosis all the time! I keep saying to myself, why am I in so much pain? Surely this isn't right? Why can't I do all the things that I use to do? There is something more wrong here and they have missed it?

However, in the cold light of day sitting in my doctors office, it is Fibromyalgia!

I am so sorry and I genuinely wish that I could say a magic word and you were better again, no more of this horrid illness!

All my hopes and dreams for you

Ken x

[karmadogma]

It is unfortunately denial, there is a physical test, they check your trigger points. You need to go to a rheumatologist to have them preform the test. The stages of grief also apply to finding out you have a chronic condition, especially when it is life altering.

[Royalspec01]

Hi there so sorry to hear that you have this illness its just like ken said. But I always think to myself that if id known then what I know now id have managed my symptoms and then preventing it getting any worse. But alas I didn't. im not sure but think this be managed and not cured although you might read somewhere that someone has had a reprieve but rarely. What I do know is if I don't manage my symptoms it gets worse. well hopes that helps but probably not. well lots of hugs and things xxxx

[rowantree]

My rhuematologist diagnosed fibro due to the trigger points. But I didn't fit the symptoms (I don't get fibro fog). So I kept researching, found something that fit better then asked my GP to refer me. Bingo - I have hypermobility syndrome. Fits perfectly with my symptoms & so many questions answered. Of course I still have all the symptoms that I struggle to come to terms with. So if you feel fibro doesn't fit do research your symptoms, but if it does fit- start on the long road to accepting it. Take care good luck.

[Coastwalker in reply to rowantree]

Can I ask what symptoms you have rowantree as my hubby has been told he has hypermobility by the hand specialist, he also has other symptoms similar to fibro.

[rowantree in reply to Coastwalker]

Hi coastwalker (good name!). If you look up the hypermobility association website and go to the forum there is more info than you could want! It's hypermobility.org . My symptoms include severely rolling in feet, bunions at age 17, knee, feet and hand pain, IBS, fatigue. There is a test you can do called the Beighton score. Look that up too. My fingers bend back quite a bit and the joints ache all the time, and are very weak. Most of my joints click, some get stuck then jump, I have trigger fingers. I have also had (or have) various problems such as tendonitis, bursitis, which are very common in hypermobility syndrome. People get carpel tunnel syndrome, back problems (I don't have these). Pulled muscles very easily, dizziness sometimes etc. do ask if you have any other queries.

[Coastwalker in reply to rowantree]

Thank you rowantree,

Most helpful, I will look up your link and check out the Beighton score.

Hubby off to see the physio at the Hand Clinic soon. He has the locking fingers, and told by doctor he has Tenosynovitis along with painful leg cramps too, (not sure if leg cramps tie in, ) along with muscle/joint aches, tiredness, some pins and needles in his fingers and sometimes feels cold and shivery. Also can't hold up a kettle for long or a home phone to his ear without his muscles and hands hurting.

Rheumy said nothing was wrong with his muscles though. ?

[mimimouse]

Sorry to hear you have fibro and yes like yourself I have questioned the diagnosis because I have been to different specialists suggesting it could be other things but over many years I have come to accept the diagnosis mainly from reading other fibro sufferers posts relating to their symptoms. I have recently completed a 12 week course on how to manage CFS symptoms ( there were only a few fibro sufferers there) but from being taught how to " be in the now" I have come to realise that I actually tense my body in response to the pain and that this causes additional fatigue. I am trying not to do this but old habits die hard! This is such a good site for fibro sufferers with lots of tips on how to manage plus support so you do not feel so alone with this awful condition. Hope you have a good day.

[Babs1620]

After 40 years of pain I was absolutely thrilled to be told it was Fibromyalgia and for the first time it is being controlled.

[nothingwrong]

Wow . Thanks peeps I am definitely grieving for the things I used to do that made me happy and probably in denial. If I had a test in front of me that could not be disputed I would be ok with that but I have found because no such test exists and some people don't even think it's real !