How to just accept this condition. - Fibromyalgia Acti...

Fibromyalgia Action UK

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How to just accept this condition.

Golfer15 profile image
40 Replies

spoke to the doctor this afternoon to get results of a blood test. He said everything was clear. I also did blood pressure readings for a week which all came out normal.

The doctor said all my problems are a result of fibromyalgia.

I suffer with fatigue, dizziness, and sweating. The doc said I just have to find a way to cope.

I'm very frustrated.

40 Replies
Nelly1 profile image
Nelly1

Hi,

Unfortunately that’s the response most of us get because the doctors are not educated on Fibromyalgia.

My GP’s response when I was originally diagnosed was “Oh no, you’ve got no chance then, if you have that”

You can imagine how I felt after that response!

The GP concerned has since retired, thank goodness.

Golfer15 profile image
Golfer15 in reply to Nelly1

Thanks for your reply. What a terrible response. At least my doctor wasnt that bad.

Carlt profile image
Carlt

Unfortunately the medical profession is not even certain of the cause of fibro, let alone have a single, effective therapy to treat it, so the GP is right to say that you just have to find ways to manage your symptoms.

Where they failed is to not refer you to specialists who can help you with managing your condition.

Pain Clinics, physiotherapists, dieticians and others are available to help and should be offered.

Aside from the pain relief available I have been referred to many different specialists, some more useful than others as I am fortunate to have a GP who feely admits they don't fully understand the condition but is willing to do the research and ask for outside help.

Golfer15 profile image
Golfer15 in reply to Carlt

Thank you for your reply. It would be good to be refered to a specialist.

Arymretep profile image
Arymretep in reply to Carlt

Lucky you! I’m afraid I had the same response, painkillers and get on with it, by learning to live with it myself

Carlt profile image
Carlt in reply to Arymretep

Lucky you!

I can't take painkillers.

Until there is an effective treatment "get n with it" is what we all must do.

Arymretep profile image
Arymretep in reply to Carlt

Me neither, but that’s what I was told, at least you have been referred to different specialists.

Carlt profile image
Carlt in reply to Arymretep

I did say that I was fortunate to have a GP willing to refer me.

I still have fibro though, so I'm not that lucky.

Arymretep profile image
Arymretep in reply to Carlt

Fortunate indeed , I wish all Drs were the same

Whiteclouds profile image
Whiteclouds in reply to Arymretep

me too doesn’t help us dealing with the pain had to do my own research purchased magnesium,B12, D3, q10, quercetin and Flarin.

Catsrock56 profile image
Catsrock56 in reply to Whiteclouds

Hi, I’m curious about the Magnesium. I just got out of the hospital and I didn’t even feel any fibro pain for about 2 weeks. The first thing they gave me in the ER was Magnesium and Potassium. When you first started taking magnesium did you feel a difference right away? How did you know how much to take? I’m also going to look up the other items that you listed. I don’t know anything about the lady two. Thanks! I wish everyone less pain!

Whiteclouds profile image
Whiteclouds in reply to Carlt

hi I was told by the doctor when he confirmed I had fibromyalgia that there is no cure for it.

Carlt profile image
Carlt in reply to Whiteclouds

At the moment there is no cure but your GP should be able to offer support to help manage the condition.

As we can see from this thread, some GPs are better than others.

Whiteclouds profile image
Whiteclouds in reply to Carlt

hi my doctor did tell me I could get meds for the pain but it eventually causes cognitive impairment : dementia, so I declined.

Golfer15 profile image
Golfer15 in reply to Whiteclouds

I know there is no cure completely but there are some treatments that help make life easier and we shouldn't just accept this condition.

1whitestar profile image
1whitestar in reply to Golfer15

hI, I was diagnosed with fibromyalgia this year, I do have the tired and dizzy side but also pain every day feet feel like I am walking on fire or nails. Hands are so stiff I can't hang the washing out. The worst with this condition I can't seem to hold my job down I go back to work then my body any part leg or arm locks up and I can not move usually in bed for 4 days and need to use crutches. My doctors are helpful and I go to a pain group and I have cut out all fried foods. I am going to look in to the vitamins you can take to help. All I bean told was you have to manage it but do things little at a time . Its really hard I've stopped riding my bike I use to love doing my long bike rides and 2 hours walk but can't do the walk that long at the moment. I am doing small but building up each day. I feel almost robbed that I can't do what I use to fully. It's hard .

smiile profile image
smiile

Hi. what was the blood test for?

I’ve had a lot, always clear but recently had vit b12, diabetes, vitamin B etc after asking the gp if there was anything else all my symptoms could be attributed to. Turns out my vitamin D is quite low. So I’ve started a very high dose for 6 weeks with my fingers firmly crossed that it will help relieve at least some of my symptoms.

After 10 years of fibromyalgia I have to remain hopeful and just wanted to say don’t give up. We know our bodies best. Good luck.

Golfer15 profile image
Golfer15 in reply to smiile

Thanks for your reply. The blood test was for most things, including B12. I went to the doctors recently saying that I have various symptoms and I just didnt want to put them down to fibro. I was diagnosed 7 years ago with fibro but still finding it difficult to just accept it. I wont give up.

bookish profile image
bookish in reply to Golfer15

Might be worth getting hold of a copy of all your test results so you know what has been done (and what hasn't) and where you actually sit in the range for each test. 'In range' doesn't mean optimal for you. I'd agree that dysautonomia seems possible, commonly small fibre neuropathy/Sjogren's/POTS/thyroiditis can be involved too. Serum B12 is not sufficient alone to rule out a deficiency. You may find magnesium helpful - some do, some don't (probably because not all of us have the same cause/causes). It helped me a lot. Best wishes

Golfer15 profile image
Golfer15 in reply to bookish

Thanks for the reply.

xstitcher96 profile image
xstitcher96

Hi Golfer15,

It may be worth seeing a different GP for a second opinion. Whilst you mentioned fatigue and dizziness, sweating does not tend to be a FM symptom (although symptoms can vary from person to person). Sweating, dizziness and fatigue can be related to hormonal changes but this would have shown up on the blood tests if your GP requested the right tests to be run (not all GPs requested full panel blood tests).

Think about whether you have any other FM symptoms like widespread pain (characterized by sharp, aching or dull pain in each of the 4 quadrants of the body), light sensitivity, trouble getting to sleep or staying asleep, fibro fog etc. and if you've had these symptoms for more than 3 months. A lot of people tend to experience their symptoms in waves wherein they will be relatively fine for a while and then the symptoms will display again for a period of time etc. Think about whether this happens to you. If this is a relatively new condition you're experiencing it may not be FM as it is hard to diagnose and most people do not get diagnoses until years after their symptoms first display as doctors try to eliminate every other possible diagnosis first.

From what I can gather your doctor seems to have pawned you off when he/she could not come up with anything else. Talking to a different, more compassionate doctor may provide you with the tools to manage your FM symptoms better or provide you with an alternative diagnosis that can be treated easier.

I hope this helps and good luck, not all hope is lost!

Golfer15 profile image
Golfer15 in reply to xstitcher96

Thanks for your reply. I wont give up looking for answers.

CM1EDSUK profile image
CM1EDSUK

Fatigue, dizziness & sweating can also be caused by dysautonomia, which can occur with fibromyalgia. I have this due to the fact I have Chiari1 Malformation associated with Ehlers-Danlos Syndrome, & Ehlers-Danlos Syndrome (& other disorders) can co-exist with fibro.

Please see:verywellhealth.com/dysauton... Fibromyalgia is listed under 'Secondary dysautonmia.'

Golfer15 profile image
Golfer15 in reply to CM1EDSUK

Thanks for your reply. I will look into this.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, it’s alright for them too say that😂imagine if they had too live in someone else’s shoes with this condition ,let alone any other conditions and the symptoms that comes with it, at least when we reach out here people totally understand. I share your frustration with tiredness as sometimes I want too keep going but fatigue gets hold and stops me in my tracks. The sweat s are very uncomfortable, did you struggle in this Summers heatwave ? Think. I spent a lot of time in doors and not pottering in my garden as it was too much .which was a shame .

Golfer15 profile image
Golfer15 in reply to Yassytina

Tthanks for the reply. Yes good to know others understand.

KimiJay profile image
KimiJay

Doctor is ridiculous because you cannot just accept something that takes at least half your life away. One thing that really helped me get some energy back was was taking d-ribose (not at night). My son has put me on to NMN which I am finding helpful and there are other things. There is a guaifenesin protocol that has been dissed years ago by researchers but I have an idea they did not all understand that salicylates negate the effects of it. I have recently been taking the odd spoonful of Benelyn Honey and lemon cough mix which has guaifenesin in it. It's helpful to me but I don't have lots of co-morbidities that lots of other have alongside their fibro. Unless you are diabetic it is worth experimentation, especially if you have any catarrh which you want to shift upwards. - Maybe your doctor does not feel that current pharmaceuticals plugged by salesmen really do that much and that accounts for some of his negativity. - Well, your name, Golfer 15, suggests you are a bit of a competitor, and with golf I imagine it makes you thoughtful too. I'm sure that qualifies you as a serious fibro-warrior. There are loads of websites for remedial potions and online research can sometimes help you make a difference. Just be careful what you mix with what. Always look up contra-indications if you are trying something new. Maybe a small flask containing something with d-ribose at the thirteenth hole would get you round the rest of the course. Being in nature on the green stuff which gives off therapeutic chemicals when just cut is surely going to be helpful anyway if you can summon the energy to get there. Good luck.

Golfer15 profile image
Golfer15 in reply to KimiJay

Thanks for the reply. I will try d-ribose. Someone else mentioned that a while ago.

Dodo21 profile image
Dodo21

Hello. I have been recently diagnosed with Fibro after more than a year my symptoms started. My GP prescribed me amitriptyline and other PKs when I described my problem at the beginning of my journey. I have seen 2 rheumatologists in the meantime and I have been referred for spine MRI scan. My blood tests are ok, except for VIT D (mildly low) and ESR high. I have also depression, anxiety, sleeping problems and GI issues. I am seeing privately a bunch of other therapists to help me to cope with pain/ distress and poor digestion (counsellor/hypnotherapist/massage therapist/ostheopat/nutritionist). It is a lot and very expensive but combined with medications and the fact I am not working atm, this is what is making my Fibro bearable-ish. I hope can help.

Golfer15 profile image
Golfer15 in reply to Dodo21

Thankscfor the reply. I will look into a therapist to help me cope.

Dodo21 profile image
Dodo21 in reply to Golfer15

Massage therapy is very effective. And also moderate physical activity like walking or static cycling. You could also sk your GP to refer you to a physiotherapist. They will explain you some useful exercises you can do by yourself at home.

Catsrock56 profile image
Catsrock56 in reply to Dodo21

at one time I was getting a massage weekly. I’m now down to by weekly because of the cost. People say “lucky you” when I say I get regular massages. It does help, but it’s more like a torture session! Not so lucky! Also not covered by insurance! Why not! It is a therapy that works. But it’s like making a car payment every month. If you do get massages, go to someplace that understands and specializes in patients with fibromyalgia. I go to a pain clinic. They know where the trigger points are and are more attentive to the amount of pressure you need. Be sure to speak up! Tell them exactly where the pain is the worst that day and let them know to back off or increase the pressure.

Arymretep profile image
Arymretep in reply to Dodo21

I’ve had fibro for many years, seen several rheumatologists over the years , diagnosed with RA in remission, osteoarthritis and then fibro. , if your ESR is high I think that’s inflammation which is not caused by fibro. It must be costing a fortune for all these treatments.

klr31 profile image
klr31

Always get your actual results to check them yourself.

Golfer15 profile image
Golfer15 in reply to klr31

Tthanks. Good advice.

fibrogirl41 profile image
fibrogirl41

hi I should think you are frustrated. I suffer from fatigue and the dizziness too and I am not sure about it and I have had numerous blood tests done. I have heard physio helps but I wonder what the cause of this dizziness is. The doctors do all these tests and they are not sure what to do when you feel like this or fibromyalgia x I hope you are ok and try to get somewhere

Golfer15 profile image
Golfer15

Tthanks for your reply. Glad you understand.

Sarahvit profile image
Sarahvit

hi Golfer, when I was diagnosed with fibromyalgia and CFS I reached out to fibromyalgia network and there was another organization but my mind has gone blank. Two years later I got involved in the twin registry out of Seattle WA. They were running numerous tests, exams, social history, psychological tests, 16 tubes of blood to run test, sleep studies, CT scans and fMRIs of the brain, exercise tolerance test etc on identical twins where one is sick with fibromyalgia and the other one is healthy double blind study in hopes of learning more and potentially finding a cure. This was back from 95-05 was the length of the research study. Since then I have been involved in 2 other studies. I had hopes that these studies would lead to a cure. So far no cure or real good treatment other than treating symptoms. I have focused my energy in getting involved in research studies that I came a crossed. I have had fibromyalgia and CFS/ME for 30+yrs. Depression, neuropathy and a whole list of other conditions have joined in over the years. It is a very frustrating condition. I wish I had better advice. I tried just about you name it I’ve tried it to no avail in beating this thing.

Laura8989 profile image
Laura8989

Hi, so sorry to read this, I had the exact same experience last week with my GP. I’m getting bad pains in my legs, ankles and feet which is different to my usual fibro pain but his response was ‘well it’s just the fibro’. Very frustrating. 🙄 he’s sent me for blood tests but that’s just to get me off his back! Take care and maybe ask your gp to refer you to your local pain management team.

Golfer15 profile image
Golfer15

Thanks for your reply. I thought my doctor was going to be good, I went for a blood test and had a blood pressure monitor for a week to take readings every day. All the tests came back normal but he didnt refer me to anywhere else. He just said I have to accept the fibro. It's not that easy. Sorry you had a similar story.

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