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Is it all in my head?

Hi everyone,

I have joined the forum, because I am getting no answers from my GP and am starting to doubt my own mind so am hoping for some help, advice, views and whatever else I can get to prove I am not going out of my mind…

I have just been diagnosed with Fibromyalgia after 4 months off work with depression (had to reduce hours from 37 to 16 when I went back) and months of being told my illness was depression and to take paracetamol for pain.

I was grateful/relieved for a diagnosis after GPs dismissing I had anything other than depression & IBS. BUT…

When I mentioned to a colleague at work that I had been diagnosed with Fibro, he said that his sister had been misdiagnosed with that and she actually had MS.

This worried me, (although I had not considered it before) because my nan had MS. I have read a host of sites, some say it’s not genetic, some say it is, some say it’s possible?

My GP surgery is not the greatest and 2 out of 3 doctors seen have suggested my pain is psychological, hence the doubt in my mind.

I know that the symptoms of Fibro and MS can be very similar but I am experiencing symptoms of both and am not sure what to do next as I feel if I bring up my worries to GP they will just discredit my questions. (I asked a few months ago if my extreme tiredness could be contributed to diabetes as my mum had it and was told, ‘snort’ let’s not make our own diagnosis and wait for blood results’???

As I’ve learned, both illnesses can not be diagnosed with blood tests and I have an appointment at the end of the month with the sleep clinic but I am seriously going nuts trying to work out what’s wrong.

My symptoms are:

Extreme fatigue… I have been going to bed at 9.30pm and struggling to get up at 7.30am, feeling shattered throughout the day, everyday

Stiffness and cramps… It can take me upto 45 mins to get up of a morning due to pain (mostly in my ankles) I also get regular cramps (mostly in calfs) but sometimes in toes and foot

Pain… Arms, legs, hips, back, shoulders…for example, I can’t talk on the phone more than 5 mins without my arms aching. I can’t walk too far without feeling exhausted (no breathlessness just achy) Knees often buckle, Hip aches, wakes me up regularly. I can’t carry shopping, and I often have to get taxi to/from work

Dizziness… Sometimes on standing, if i look behind me whilst walking (i.e looking for bus) I feel dizzy when I turn back around and wobble

IBS… I have an urgency with bowel movements, whether diarrhoea or constipation i feel an urgency to go :frowning: I regularly have accidents, both at home and out

Sensitivity… Bright daylight (not necessarily sunshine) Loud TV hurts my ears, I have a large TV but have to squint to read words due to bluriness

Vision… Not too bad apart from blurry vision as mentioned above

Periods… I have had the Mirena coil since 2000 (after the birth of my last baby) and have not had a period since then until 4 months ago…Also had an abnormal smear result and had to have a colposcopy (waiting on resutls) Bleeding is light and lasts a day, but have all the abdominal pains of a period (I am 43 by the way)

Mind… I only work 16 hours a week now (9-1 over 4 days) and yes my job is demanding/stressful, but after about an 1 1/2-2 hours my mind seems to turn to mush

Depression/anxiety…Have suffered with this for years so not sure how to relate it

Headaches…Have had many over the past few months but other pains outweigh them

Exercise… Is a nogo zone. I go food shopping once a week and am exhausted for up to 48 hours after

Numbness…Often get pin and needles in fingers and hands also get extremely cold

GP has prescribed codine and naproxen for pain and also steraline (anti-depressant). Pain does not go away, but I feel more relaxed. However, since starting these I am experiencing insomnia, dry mouth, itching and restlessness…

So anyway, after all that, I guess I am asking, is there a chance this is MS rather than Fibromyalgia? (especially as my nan had it?)

Thanks guys, sorry for the long post but wanted to get as much as I could out there.

Work colleagues are poor diagnosticians and so are we. But you know that already. Doctors aren’t always super-sharp either, of course, but you know that too.

And yes, sometimes people dx with fibromyalgia do sometimes turn out to have had MS all along. The mistake does not tend to happen the other way round, because the cold, hard evidence of MS is there to see on the MRI scan in a way that evidence to back up a fibromyalgia dx is not. They are both rotten conditions to have, but the enormous, wonderful advantage of fibromyalgia over MS is that fibromyalgia can get better and MS just gets worse. However poorly you are feeling, hold on to that thought!

For what it’s worth, what you describe doesn’t sound particularly MS-y to me (says she, who has just warned against amateur medical sleuthing!).

As for MS running in families, well there is a familial link, in that the (already small) risk of getting MS is slightly higher for someone who has close relatives with MS, but it remains a small risk. Most people with a family history of MS do not get MS themselves. Most people with MS have no family history of it.

I am sorry that you are having such a rotten time at the moment.

Alison

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Hi there!

I am in a similar situation to you. I was diagnosed with fibromyalgia a couple of years ago and was happy to know that it wasn’t just in my head. I fully believe I have fibromyalgia and have had since I was a child.

However I recently went to my GP about symptoms that were not typical for me and which seemed to be getting worse (balance, dizziness, a new level of fatigue, numbness etc, vision changes, dropping objects and more).

I too met with an unhelpful doctor who actually made a joke about me thinking I might have MS and all sorts of other illnesses. Very frustrating and embarrassing. Despite this he did refer me to a neurologist and that neurologist decided to order an MRI as I have never had one and some of my symptoms were a bit more worrisome.

However I am fully expecting the MRI to come back clear and from what I have learnt about fibromyalgia it can have a LOT of different symptoms many of which you have described.

Like the poster stated above we are not doctors so we can’t diagnose. I can say that in my own experience of fibromyalgia I have had all of the symptoms you have listed above. However I do think if you can get your doctor to refer you for an MRI that would be a positive thing, just to make sure that it’s not MS and also to put your mind more at ease.

I know how frustrating this all is so feel free to PM me if you would like to talk further!

x

Thank you all for your replies.

I asked my GP whether the Mirena coil could be causing symptoms when I had it changed a few months ago, because I would have chosen another method. She assured me it wasn’t responsible.

Thanks for the re-assurance that although MS can run in families it doesn’t mean it will. That was my main concern that I could have MS along with a few of the symptoms.

I have had my bowel problems investigated as they initially thought I had Crohns disease due to the incontinence and a couple of Perianal abscesses, but turned out it’s IBS

My eye tests are always okay. (Although I haven’t been for over a year)

When I say my brain turns to mush I mean concentration disappears, I lose my train of thought and get confused - for example, whilst doing my job I forget to do things (that I do dozens of times a day) and then spend ages trying to work out why the system doesn’t accept it. Or if I am talking to a client on the phone and they ask a question, it throws me, I lose my train of thought and then forget why I called. I have also physically moved or completed pieces of work without finishing them. So far I have realised straight away and retrieved them. I think it’s happening so much because I am so tired. I also sometimes get my words jumbled whilst speaking. I have always been quite an on-the-ball person, and the past few months have been so frustrating.

Like has been said above, Fibro is probably the extent of it, and whilst it is a frustrating and painful illness, there is the possibility that it will get better

Morrigan, thanks for the offer of PM if I need to talk - I may need to take you up on that

Thanks again everyone for your thoughts and advice - It’s really helped x

H

Like you I am new to the forum and also like you a few years ago I was told I had fibromyalgia. My youngest sons childminder was diagnosed roughly the same time as me. As time progressed so did my symptoms where as she has flare ups but isn`t left feeling progressively number etc after each flare up calms down. They then moved away from fibromyalgia with me. Again I am by no way a Dr but maybe this is something also to monitor? I even had a Dr tell me that people are diagnosed with fibromyalgia until they can figure out the real illness (his words not mine). He did not believe it to be a real condition and like you this put seeds of doubt into my mind regard my own sanity.

I am on two tramadol a day along with my steroids, although they do not kill the pain fully they do help take the edge off to a degree that I can concentrate more.

Like all above I am no Dr but just sharing my experience. I hope it helps?

Ian