Wrong diagnosis? Not fibro? - Fibromyalgia Acti...

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Wrong diagnosis? Not fibro?

rowantree profile image
8 Replies

I knew I had OA in my big toe joints and suspected I also had it in my hands and wrists but the rheumy suggested fibromyalgia as well. I have wondered about it, which is why i came here (!) but I don't get the tiredness, and brain fog that others get. My main symptom is Pain In specific joints, And aching and weakness in others. Anyone else get a diagnosis of fibro that they don't think it's right? Seems odd when most people with fibro have trouble getting a diagnosis. I do have nearly all of the tenderness / pain points they check for, and IBS. Just not the other symptoms.

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rowantree profile image
rowantree
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8 Replies
charlii profile image
charlii

Hmmm, morning rowantree....you have got my foggy brain working warly this morning lol. Even though we all fall under the umbrella of fibro, no two people are the same but there are certain symptoms that seem to be more or less totally fibro, such as, the pain....ooo thats the biggy, we all have that in bucketloads, aching and weakness is universal ive found too. Tiredness is very common and so is IBS. When i first contracted this curse i dont think i had the brainfog that i do now and its deteriorating rapidly which is a bit scary, but its got me thinking, how many of us have the brain fog? We are all different and the list of symptoms is endless as im sure yu have read on here, but, if you have any doubts (and you know your body best) then please talk to your gp about them, he/she may be able to explain more ao you can ask for a second opinion from another rheummy where you can share your concerns. Please let me know how you get on.......Love Charlii xx

I do have osteo arthritis but this arrived when I was 43 .. 18 years after my fibro ... But after I was first diagnosed and got old meds .. I went into what I would describe as like a remission , I could drive , work , cycle , etc etc with just the odd week of flaking out with fatigue then up and at it again... As I have gotten older and especially since I somehow invited arthritis to stay my fibro symptoms flare up more frequently .. I think part of it is due to limited mobilty with the arthritis.. But yes fibro affects us all differently but as we have so many diverse symptoms you can always find someone with the same symptoms and can learn many useful hints tips and meds to ask your GP ... Do you think this would help.

In my own personal opinion if you have the tender spots and ibs It certainly sounds like fibro with the added joy of OA ...actually it sounds like I am replying to my own post as I have all 3

VG x

rowantree profile image
rowantree

Oh good. Welcome fibro(!) I'd kind of accepted the osteoarthritis (although I'm only 41!) but I'm not quite ready to accept another diagnosis too. I will have to work on my acceptance. I have another rheumy appointment in 3 weeks to discuss the X-rays and blood results, but that's probably what he's going to say I guess. Apart from the pain in my hands and toes, and the IBS, my main issue at the moment is pain in my heels! Any advice would be highly appreciated. I have insoles for high arches, and I bough memory foam insoles to put on top, but they just squash down to nothing. I thought about trying gel heel pads.

I know I keep saying it, but this site is great! Thank you everyone.

in reply torowantree

If you have a good rheumy he can refer you to orthotics for specially moulded to fit insoles... My rheumy did . He also got social services to come out to my house and get me some very helpful aids to help me round the house..... I had got used to my fibro but wasn't prepared for the OA at 43.... So I can sympathise totally there

VG x

Hi Rowantree

The fatigue that many fibro sufferers experience is not a deciding factor. It is in fact the widespread pain, and tender points that are the main indicator.

In relation to the pain in your feet, it sounds as though you may need made-to-measure orthotic insoles. I had some made a few years ago, and they are an absolute godsend. I paid for mine privately (didn't know there were any options) but apparently you may be able to get your rheumy to prescribe them for you. Now I can manage with off-the-shelf ones, due to the massive improvement from using the made-to-measure ones. There are so many types and makes, and variable quality, it really is worth going to a specialist if you can.

Good luck with getting your feet sorted out. Sorry you have to join us here because it means you share this horrible illness, but glad to have you on board!

Kaz

xx

ladymoth profile image
ladymoth

Yes - what they all said!

I haven't much to add, but like VG, I have arthritis, have generalised muscle and joint pain, sometimes get the crushing exhaustion, sometimes the brain fog, but rarely the tender points. It doesn't make a great difference, really - the treatments are usually based on the symptoms you personally suffer, and that too varies from person to person.

Moffy x

Ginsing profile image
Ginsing

Morning I hope you havent but a lot of us have other things as well so itcan be difficult to say . My rheumy looked across the table and said he was sorry there was more than one thing wrong and then went through a list. So get your toes sorted good luck xgins

Kugagirl1 profile image
Kugagirl1

Hi you sound like i did in the beginning i dident have the fatigue all the time just every few months i would just crash an sleep round the clock , or when i went on a night out i had to go home earlier & earlier if i had the grandkids id b shatterd after just stuf like that an thought well im not getting any younger so just body slowing down .

I had an have the same pain as you heals , hands but also my back neck shoulders legs an elbows most arthritis an some transfer pain from my back . I said the same evan to this week i haven't got fibro its a mistake .

But ive had new symptoms this week that tally, dun some more research asweell & asmuch as i hate to say it know e fence to anyone but i think the doctors are right ??.

I think as a lot of the sufferers on hear have had it a long time or not bean diagnosed till its quite advanced plus also all have other medical condishens it can be confusing .

I just looked at the basics an we all have them or get them but in all different ways and different grades .

Hears hoping you stay not getting all the condishens because lets face it just having 1 or 2 is enuf .

Fingers crossed for you Kugagirl xxxx

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