Recent diagnosis

[York666]

Hi. I have recently been diagnosed with fybromyalgia (likely to quote GP) and I told him I cant accept that. I dont have pain when touched as many sufferers do. All other tests come back fine. Hypothyroidism bit high but I'm self dosing the amount to see if this is what I causing pain. I'm at a loss

[Blue-52]

hu, I’m sorry to hear you have been diagnosed with fm. Every one suffers differently with fm, and the doctor came to this conclusion because of ruling out any other medical reason.

If you are not happy with the diagnosis ask to be referred either to a pain clinic, also you can be diagnosed by a Rheumatologist. Either way I wish you luck, and hope your pain eases soon.

[York666 in reply to Blue-52]

Thank you for your kind reply. Been tested for various possibilities for 3 yes now and this seems to be the only conclusion. Just finding it difficult as cant understand why pain just appears from nowhere.

[Blue-52 in reply to York666]

You are very welcome. I know it’s hard to think, ahh great fm and now what do I do. I’m afraid the pain appears from nowhere, so many things can trigger it, and it takes time to find your triggers, or may be no triggers, it’s swings and roundabouts with us lot, just keep telling yourself you are special, and you are not alone, you have all us on here to help and try and guide you.

Take a bit of time and do some research on fm, you may find things that can help or aide you. Good luck.

[aksg in reply to York666]

Same happens with me. And diagnosed fm by rheumatologist. I am sorry for you as i can understand the everyday difficulties with fm. ☹️

[Judithdalston]

I have hypothyroidism and fibromyalgia ( along with other things), and can’t unpick their symptoms. What do you mean by ‘hypothyroidism bit high but I’m self dosing’… you got full thyroid blood results, along with ferritin, folate, vit D and B12 results? Some ‘normal/within range’ results do not suit us. You are dosing with what?

[York666 in reply to Judithdalston]

Hi , I found when I increased my levothyroxine dosage the carpal tunnel pain decreased therefore I had been sort of playing Russia roulette to see if I could get it right. Blood tests however unsurprisingly came back on the high side so now lowered to 100 which I do see a difference pain wise though not completely. Think this is the reason I'm reluctant to accept its fybromyalgia

[Judithdalston in reply to York666]

How are your b12/folate levels ( better than halfway thru ranges)? I had carpel tunnel years ago and since topping up b12, and other Bs, folate and vit D with high quality supplements I’ve not noticed it. Might be worth considering, I get bloods for these done as a package with full thyroid test thru Medichecks as GPs reluctant to test for any mineral/vitamin unless my private endocrinologist suggests it ( and then for potassium and calcium). You know that hypothyroidism often goes with poor gut absorption thus our food alone may not be enough to get vit/min levels optimal?

[York666 in reply to Judithdalston]

Hi and thank you for your reply. My neurologist recommended vitamin D supplement as this came back low. Had brain ,thoracic,lumbar mri scans and although I have carpal tunnel symptoms, the nerve conductor test came back normal,however was advised to have carpal tunnel release surgery and did to no avail, symptoms remain. Advised to have the surgery due to injections of the wrist helping albeit briefly.

[Judithdalston in reply to York666]

Gosh…surgery perhaps offered too quickly! I take a vit D in liquid form with vit K2 to get to where it’s needed in bones and teeth not in the blood, GPs tend to offer far too a low dose unfortunately perhaps mixed with something like calcium. Go to healthunlocked sister site Thyroid Uk for advice on dosage/ brands of vit D.

[York666 in reply to Judithdalston]

Ahh thank you so much. I will certainly do that.

[lovelab in reply to York666]

yes. definitely check thyroid uk for advice. I have pain and for years was told it could be fibro. I was in fact badly hypo without knowing and not absorbing my vitamins as a result. So low vit D, folate, B12. It is work in progress getting correct thyroid medication and vitamin supplementation for me.

[York666 in reply to lovelab]

Thank you. I'm going to ask my Gp if I've been tested for B12 and iron. Pretty sure my doctor is frustrated with me but worth a try

[Asherlove1 in reply to Judithdalston]

I too have FM and hyperthyroidism along with IBS, Bile acid malabsorption, CAPS, diabetes and now have Liver disease(NASH) grade 4. The last 10 years have been so bad, starting with a discectomy and then a spinal cord stimulator inserted, but the stomach pain I live with everyday is the worst. I had both hands operated on for carpel tunnel years ago. I've just been told about this site from a lady who was in a pain team zoom meeting with me, so I'm really interested in outside help, as I've become isolated as many days I can't get from my bed with the tum pain.x

[York666 in reply to Asherlove1]

So sorry to hear of your suffering. Pain is so debilitating 🥰

[Asherlove1 in reply to York666]

It's horrendous, and the longer I go on, the more pain I have with my stomach. I was told to try hypnotherapy from my gastroenterologist, but it didn't help. I'm on so many tablets now, which probably hasn't helped my liver. Gastroenterologist has no other solutions to try, as I've done everything. I'm now waiting for the neurosurgeon who did my spinal stimulator, to put me on another trial with it inserted higher in my back, which apparently may help, but its a waiting game, which I've been tempted to end on many occasions.x

[York666 in reply to Asherlove1]

Yes it feels never ending. Very difficult to deal with. Take care of yourself

[Judithdalston in reply to Asherlove1]

I hope members do you some good…many of us have co morbidities, so sympathetic, and good at moaning about our own health, or experience with medics! If I knew what I know now at 27 when some of my problems first emerged it might now be different. Fortunately for me my father was a medic and instilled in me not to trust surgeons….to date having got sepsis/septic shock as a result of a simple procedure producing the insulin dependent diabetes and then fibro, I should have remembered! At 27 I had the first problems with excruciating neck vertebrae, and a Gp who said ‘what do you expect you are getting old?’ No wonder many of us try DIY treatment and support. Welcome Asherlove.

[benidorm21 in reply to Asherlove1]

Hi it was me who directed you to this site , just seen your post and hope it helps to be able to talk to the many people who live with pain .

We are very lucky to have been accepted by the pain team for zoom meetings , as the service is very part time , there is a lot of psychology involved which most people dont realise ,but i am keeping an open mind .

Please try to keep strong and hope you have a better day today and maybe chat at the next zoom , unfortunately there doesnt seem much time for that

[Asherlove1 in reply to benidorm21]

Sorry, I've only just seen your message. I am terrible with dealing with emails.

I have been through the pain team twice before, but I honestly don't see the point of them. They don't seem to be able to do more than a doctor, and I think it's a waste of NHS money, but I'm listening to them. I've been so tired all week, and only picked the pad up to look what time my appointment is tomorrow.

Thank you for putting me on to this site, when I get a boost of energy, I'll be looking though it all. Thanks again.xx

[benidorm21 in reply to Asherlove1]

Hi i know what you mean , i had the one to one yesterday and told her the sessions were too long, and i thought they should give people time to talk to each other.

[Asherlove1 in reply to benidorm21]

Are you ready for our final session today? I've been awake all night, so hope I'm still awake for the zoom meeting, but to be honest, I doubt I'd miss much if I did go to sleep. It's been a tough week as we lost my sons friend, who's nan I worked with years ago, and I held him when he was a couple of days old. He had suffered with so many problems through his life, and last year found he had cancer in his bile duct which he had chemo for, and they said he was doing well, and they gave him a break over Christmas, and he had a scan in the new year, and he had a mutation in his lung, so more chemo, but he had another scan in March and he had gone further in his lung, to his liver and top of his spine. He and I were always messaging each other, and when he gave me the test results I couldn't believe it. He wanted to see us "before his time was up" and from the results, he went within 3 weeks...25 years young😭😭😭

[ShelWhitt in reply to Judithdalston]

Apologies for crashing someone else's post. But if you don't mind would like to ask you about B12/folate levels. I too have officially been suffering for years with fibromyalgia nd hypothyroidism, with little or no respite, and tried just about everything.. A few years ago I used Medicheck for thyroid test and my B12 was slightly above borderline, cant remember folate, but when i asked GP about taking extra B12 as a supplement and she said no. Would not even look at my Medicheck results as apparently they only accept NHS tests and they said TSH and T4 were OK, Asked about a B complex supplement but she still said no. I worry that if I go against their say so and things go wrong I will be out on a limb, so just wondered what your experience was and what dosage of B12 you take, and does it work? Thanks for lisening!

[Judithdalston in reply to ShelWhitt]

you’ll get best b12/folate advice for hypothyroids on sister Thyroid Uk site. GPs tend to accept that a vit/min blood result just in range is perfect.y ok, but hypos need more generous levels, and they have difficulty getting them from just normal food intake due to associated gut problems. Folate serum levels should be at least halfway thru range; Active b12 over 100 units. You’ll need good quality supplements, including a complex of b vits, as they all need to be in balance…go and explore the Thyroid Uk site for suggested brands, dosages etc.

[Hazel_Angelstar Administrator FMA UK Staff]

Fibromyalgia is different for everyone, and you can have fibromyalgia with very mild pain levels

Fibromyalgia pain is due to disordered pain processing rather than injury or illness - which is why it appears to come from nowhere and does not show up on blood tests

[Midori in reply to Hazel_Angelstar]

I agree, I don't get vast amounts of pain now, although I used to. Mainly now it is the old knees, but my main problem now is the fatigue and the brain fog!

Cheers, Midori

[ExhaustedAngel]

Everyones' experience of Fibromyalgia is different, I have days when I cannot get out of bed ,days when I am in severe pain , days when I cannot bear to be touched, & days when I can live a relatively 'normal' life . Wishing you the best help you can get, PACE yourself & do not overdo anything , Bless You !

[York666 in reply to ExhaustedAngel]

Thank you for your kind words. Yes the fatigue is unbearable at times.

[KimiJay]

Hi. Sorry to hear about your diagnosis. All I can suggest is that you have the option of trying something that has worked reasonably well for me over the years, give or take a few horrible times, sometimes of my own over-doing it. - As well as chiropractic, I've always been to an acupuncturist on and off so when diagnosed went more often. A traditional chinese trained practitioner diagnoses weaknesses in your body from five pulses in your wrist. They then treat the meridiens that those pulses indicate need strengthening. It's not a cure all, but it does work quite well to balance things up so you feel some relief. It also helps with energy levels, headaches, guts, all sorts of things, especially mood. They also tell you when you are dehydrated which is a very positive thing. - Needles are not a problem because they are so thin.

I like heart meridien treatments, particularly if someone has upset me so that my energy level drops. I go about once every three or four weeks usually and that mostly keeps me ticking over. - If you try a practitioner who doesn't seem much good try asking around who people consider good. Mine is a lady who is good with women's things though she also treats lots of men too in her practice. - Hope you find what works for you. Spring is here and the light and warmth returning along with much needed vitamin d. - Keep going. Rest often.

[Turquoisesummer]

Hi there, I'm sorry you're having pain and not sure the cause.. if it helps at all I've never had pain as such when touched either, but it feels more like it relieves the pain like a massage. My pain feels like constantly tense, overworked muscles (sometimes aching, sometimes burning, sometimes stabbing, sometimes all kinds, and it always seems to depend on what muscles I've been using the most as to where pain is the worst or not so intense) that constantly need stratching and massages and heat and cold to relieve some pain. I have the fatigue and sensitivity issues too and sleeping difficulties. It's good to know that it's nothing sinister but it is frustrating trying to work out how to relieve symptoms and dealing with the problems and loss it can bring. I hope you find clear answers and that whatever it is you find relief and cope well. Wishing you effective pain relief and all the best. Xx

[York666 in reply to Turquoisesummer]

Thank you for your kind words. Your words bring tears to my eyes as what you describe is exactly how I feel. Although I'm a rational thinking person, I just cant accept this diagnosis. My gp has come to this conclusion without referrals to endocrine or rheumatology.

[Turquoisesummer in reply to York666]

I'm so sorry you're going through this. I wouldn't wish this on anyone, and knowing how it is, I wish I could take your pain away. I get you, I'm super rational, too, and it's hard, especially when the emotions start taking over because we feel we have no control.. Can you insist on those referrals? Over here I think it's a bit easier to get them because we have a relatively small population. If it does turn out to be fibro, I can offer my advice on everything that has helped me although I do still struggle. It's taken me 5 or 6 years to accept my diagnosis. I kept hoping and believing that one day I'd wake up feeling "normal" again Whatever it turns out to be in your case, I'm here, and we're all here, to offer our support, advice and encouragement. And if I can add one thing that I wouldn't have dreamt of thinking let alone saying until recently, I have really grown and learnt so much in ways I wouldn't have in the past few years because of this and I've met the most beautiful people who are going through similar. I've learnt to really, truly appreciate the little things, like sunshine and oceans and the moments I'm not in so much pain. I really hope and pray your pain goes away. But if you do need advice or support, this community is absolutely amazing and has gotten me through the toughest time of my life. *gentle hugs* as we say here😋 I hope you had a bearable day and found many moments of joy. Contact me or continue to post here if you would like anymore support or advice.❤

[saj01]

hi, Hope for your sake it's not fibro.

You talk about carpal tunnel. Yes that is painful I've had it in both wrists. Been through the steroid injections etc which wear off, besides which you're only supposed have a maximum of 3 as it can cause damage. The cure for both was having the operation done ... not at the same time I hasten to add, as there were several years in between.

I sometimes get the tightening at the wrist but not the tingling as before. I don't miss the arm shaking routine at night!!! but I do the stretching exercises from the shoulders all the way down t the joints in my fingers.

By that I mean stretching out the arm with right palm facing up , fingers stretched out , then applying pressure with the left hand across the fingers, which bends the right hand downwards, thereby widening the tunnel at the right wrist.....if that makes any sense?

If anyone can come up with helpful tips for raynauds, that would be a great help. because I can't take nifedipine or similar.

[York666 in reply to saj01]

Ahh unfortunately surgery did nothing for me. Tingling ,numbness pain remains. Only time I'm pain free/ish is when taking amitriptyline which isnt sustainable due to work commitments. Dont tolerate these meds very well. I have a colleague who has Raynauds I can ask her how she manages /any tips etc.

[saj01 in reply to York666]

Thank you for checking with your colleague. It's unusual that the carpal op didn't help.

It usually does, although I know that for some people it did come back again eventually. Have you tried steroid injections... they can be helpful.

Although I'm just wondering if the trouble might be elbow/ shoulder related, as I found out when I had a course of physio a few years ago for torn right rotor cuff and they gave me the stretching exercises I described before when I told him that I was having numbness/ tingling in my right hand and was concerned that it might be carpal tunnel again.

I won't take pain killers now unless it's absolutely necessary as it messed up my stomach. I'm a bit of a lightweight and find most meds disagree with me. It's a grand life !!!

[York666 in reply to saj01]

Ahhh it certainly is. When I had nerve conductor test it came back normal however was advised to have surgery because injections helped albeit for a very short time. I wont have 2nd hand done.,no point. I've had 3 MRI and numerous blood tests and all come back fine. Seems this is why gp has settled with fybromyalgia.