ME or Fibromyalgia : Hi I’m new on here... - Fibromyalgia Acti...

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ME or Fibromyalgia

Goldendoodle1972 profile image

Hi I’m new on here. 6 years ago I had a stomach virus or poisoning. It left me with body aches all over. I was told by my Dr that I had ME and have just got to get on with it. I was so upset as no support offered. All bloods were normal. Since then I get flare ups where I struggle to get about and don’t recover well straight after exercise. I can’t work the hours I used to for myself. Another Dr says I have fibromyalgia. I have been waiting to see a rheumatologist since February but due to COVID it’s going to be next year. Is it worth me going privately to get some proper answers. ?

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Goldendoodle1972 profile image
Goldendoodle1972
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14 Replies
Cat00 profile image
Cat00

It's such a personal choice to make, I would say it depends how much it would cost but that's because I have no money, if was able to work and had the money I would probably do it!

The only other thing I would say is that fibro is not much of a diagnosis if it's answers you want. It's only a diagnosis in the absence of any others that you can test for and in my opinion you'll never really know if you have it until they can developed a test for it. Having said that having any sort of name attached to your pain can hopefully give you access to things like the pain clinic more easily I suspect. You can also compare experiences with others on a forum like this. Personally I've never found a GP or rheumatologist that's was at all helpful and personally have had no support for my fibro but some people do get helpful doctors so you never know?

BlueyGreen58 profile image
BlueyGreen58 in reply to Cat00

I get no support from my Drs. For years l have wanted to change them but because of this virus now and Drs arnt really seeing any patients,,,, l think l should stay where l am atm as got to fill my pip form in and new Drs wouldnt know anything about my problems.

All as my Drs do is just put me on more higher tablets. Thats NOT what l want. I want help to deal with it. I also suffer really bad with depression but they wont send me to a mental health team. 😭

Cat00 profile image
Cat00 in reply to BlueyGreen58

I did manage to change my GP practise after years of being unhappy. I read a book about how fibro, hypermobility and chronic fatigue were linked. It found through reading that that all the other conditions I'd had for years, like insomnia, bladder pain syndrome, migraines, IBS, anxiety, Raynauds etc etc were KNOWN to be all connected with Fibro. I basically booked an appointment with my Gp, took my book with me and screamed at her in tears. ALL those years I thought I must be mad, I must be a hypochondriac I couldn't possibly have all these things wrong me, since I was 12 years old. I basically shouted at her that all she had to do was to tell me they were all linked, that there were many others out there like me and she could have saved me years of suicidal thought and depression, but they never bothered! I changed surgery's after that they were probably glad!

Adding to that however, if its any consolation, I had twenty years of various therapy since I was 19 and none of it helped me particularly, they just don't seem to be equipped to deal with mental health problems brought on by chronic pain and no sleep. After all those years of therapy I had 3 nervous breakdowns brought on by trying to carrying on with university etc while in so much pain. After I finally gave up on normal life, career, social life etc I went to a Buddhist centre near me because they had a course called "living with pain"I didn't think it helped at the time but I came to realise a year or so later it had helped me come to terms with this new identity I know have to inhabit.

Midori profile image
Midori

Possibly, but I have heard that some GPs won't accept a diagnosis from a private Physician that they haven't referred you to themselves. Check with your GP first to see if he will accept a Private diagnosis.

Cheers, Midori

Getting diagnosed with fibromyalgia in many cases is a long process. I was undiagnosed by a range of specialists for 6 years before meeting the right pain management doctor, by neurologist.

I would recommend sticking with the GP, there’s likely a multitude of tests they want to do to be sure (which you may not want to pay for). You may kind of want to go through this because the information from departments are passed on to the gp.

I know it’s awful waiting, but I went private once, during my early symptoms and was glad the rheumatologist was able to arrange my testing on the NHS. That was 7 years ago, mostly a long detour.

Answers may take time with pain disorders and having an answer can take more time to accept or deal with (since some professionals can be unsympathetic). Hang in there.

Look after yourself. xx

Goldendoodle1972 profile image
Goldendoodle1972

Thank you very much

Eryngium profile image
Eryngium

Hi Goldendoodle1972, I'm sorry to learn of your experience. Waiting is awful. I have a similar story. D&V virus Christmas 2018 & never got my energy back. I managed to work full time for 6months following this but struggled. By summer 2019 I was constantly dizzy and had developed every symptom of fibromyalgia. I haven't worked in 18months. However, I was commenced on Levothyroxine for an underactive thyroid and found to be deficient in B12, VitD & Iron. My GP doesn't believe in Fibro! I've recently been reviewed by a medical consultant who agreed that I've got all the symptoms of fibro/CFS syndrome but also said that if I can pin point when I became unwell with the virus, its most likely to be post viral fatigue related. He explained that symptoms can last for years. I supplement Vit D which has helped my joint pain. B12 injections also have helped with the dizzyness but the fatigue is awful. Typically a rheumatologist or neurologist would diagnose fibro and if you have the money you would be seen quickly and get some answers. Perhaps you could ask the lovely people on this forum for a recommendation for a private consultant. Hope this helps x

Goldendoodle1972 profile image
Goldendoodle1972 in reply to Eryngium

Thank you

lioncub profile image
lioncub

I'm diagnosed with Fibro but other family have ME. My rheumatologist said they are on a spectrum and depends on pain v energy levels. I can now manage my pain but the fatigue and muscle weakness is life changing. Ultimately neither diagnosis is helpful as the attitude 'get on with it' is the same, but both need you to stop, rest and pace. Pushing yourself makes you relapse. Find your baseline of activities that you can do without causing a flare and slowly build on that. It really makes you value what you can still do for yourself in between resting.

Jockabenny profile image
Jockabenny

I would definitely seek a private consultation for the sake of £200 to see someone that truly understands what your going through and will explain all about both ME and Fibromyalgia and also tell you what’s available to help you live with this debilitating condition,he won’t offer any miracle cures as there isn’t any but with a better insite how to manage this and what they will recommend to help with your pain and your mental health is worth investing in a rough guide of £200 and they will examine you and may even refer you to a pain clinic, tell them you don’t have private healthcare and your paying yourself and any tests can they be done eventually by the NHS and at least this way you will be better informed. This is the way I went as my doctor as never ever given me any support or advise on both my ME and Fibromyalgia and now osteoarthritis but the pain clinic have been wonderful in offering different medication and treatments to my lower back where I experience a lot of pain by way of injections to help me cope with the pain and hydra therapy helped for quite a few days after,anything to give myself a break from the continuous pain

At this moment in time I think it’s the only way to go as doctors are busy with ??? ahh well ahhh not COVID as that’s the hospitals anyway please give this some serious thought I’m sure you won’t regret spending the money and good luck sweetheart ❤️

MALC19 profile image
MALC19

Hi i do have both ME and fibro.

Was diagnosed ME in 1988 and fibro 2016.

ME was diagnosed National Hospital for Neurology and Neurosurgeons, Queen Square, London before ME hit the media.

It is one of top hospitals in London.

I had a near fatal Strep tonsilitis & Glandular fever. The bacteria in my throat grew so fast and nearly closed my throat. I was in an isolation hospital for tropical diseases. I do not remember much about it as i was pretty much out of it.

I got better obvs as still here to tell story.

Couple years later i went down like a ton of bricks with a stiff neck and other strange symptoms, saw GP in my dinner hour from work and was sent straight to hospital by ambulance.

Agter my recovery on another visit to GP he sent me to The National where i was diagnosed after many tests. The virus had laid dormant in my body.

I eventually had to give up my job that i loved and worked so hard to become a manageress.

All these years later i still suffer with constant pain, night sweats, cannot control my temperature one way or another, all my senses are heightened.......eyes ache with light (photophobia) wear sunglasses everywhere even in winter and rain......ears cannot deal with loud noise especially loud stereo’s, TVs blaring etc.....taste, can no longer eat curry (which i loved) or hot spices, chilies etc.....smell, i can smell from a long distance especially horrid things....touch i cannot have anybody cuddle or massage, i have soft body pillows on my bed, plus i have loads of other symptoms that would take forever to explain.

I was then diagnosed with fibro by Rheumatologist in 2016, i had 15 out of 18 tender spots on my body and gave her all my history from National.....so to answer your question you can have both as was explained to me..... they are both very similar in diagnoses and also some same symptoms as MS with a few differences and i have to say bit by bit my health has deteriorated over the years and i now have so many medical issues.

It does take a huge amount of tests for both illnesses by a process of elimination and seeing some really unsympathetic and downright hostile medical professionals BUT there are also some really lovely, caring, kind professionals too so it is like life, taking the rough with the smooth.

Neurologists, Rheumatologists and specialists and pain clinics all deal with ME and Fibro. If you get to see at least 2 out of this list you are on a winner as they are specialists in their fields.

Good luck and i hope your journey is shorter than mine was as ME and fibro are both known accepted illnesses now with medical professionals.

Wishing you well 😊😊

MALC19 profile image
MALC19 in reply to MALC19

Sorry this post was so long 😊😊

Goldendoodle1972 profile image
Goldendoodle1972

Oh my word my heart totally goes out to you it really does xxx do you take good supplements?

MALC19 profile image
MALC19 in reply to Goldendoodle1972

Hi Goldendoodle.Yes i do take a variety of supplements all recommended by GP.

I get calcium and Vit D on prescription but others i get from health food shop. B1, B6, B12, Zinc and Magnesium.

Plus Turmeric in my diet.

Yes it is a very long road for diagnosis but mine was traced right back to the virus i had laying dormant then rearing its “ugly head” later.

I have never been able to go back to work and bit by bit my body has gradually deteriorated but i do try to stay positive as it helps.

Take good care of yourself.

Mal 😊😊

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