I have been diagnosed with fibromyalgia today however, I feel that this is just a name for a condition they can not do anything about. They do not realise how painful this is from day to day and there is no real treatment for this. Such a shame as I’ve struggled for years with full aches and pains.
fibromyalgia : I have been diagnosed... - Fibromyalgia Acti...
fibromyalgia
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Painspains
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Hey, sorry you feel this way. Were you told that there is nothing that can help Fibro in terms of treatment?Were you diagnosed by a GP or rheumatologist?
Painspains in reply to
No physio did today
in reply to Painspains
That’s unusual to be diagnosed by a physiotherapist. Do you feel you need to speak to a rheumatologist or a GP to discuss treatment options to at least help with the symptoms? I don’t think it’s true for the physio you say there is NOTHING you can do to help Fibro
catherine19611 in reply to
i had a physio tell me as well, then she told my GP who sent me to the consultant who finally after 2 years also said it was fibromyalgia and chronic fatigue
Painspains in reply to
No rheumatologist referred me to orthopaedic because he said he didn’t know why I was sent to him.
DizzytwoModerator
Hi there, welcometo our group. I would strongly suggest you speak with your GP. A physio is not the right person to give you that diagnoses. And there are a number of option's to help with fibro symptoms if indeed you do have fibro.
Blood tests are the first thing a GP tends to do if they think a person as fibro. They do that just to rule out any other problems that could be causing your pain.
I think the physio was out of order imo to tell you what he did because he/she is not correct.
Momo
I have had numerous blood tests and scans but they all came bk clean, so he said that it was that and sent me packing basically.
Have you got copies of all your blood test results? I have found it very useful to keep these and to work out what they mean (as far as possible!). Sometimes things which you would expect to have been tested, haven't been. Getting your vitamin and mineral levels as close to 'optimal' as possible may help you feel better over all. Best wishes
Have you had full panel of Thyroid Function Tests done? If not I would recommend that you do. I was diagnosed with Fibro 20 years ago, I refused to accept that. Turned out I had Autoimmune Thyroiditis, which I suspected. Agree with bookish about vitamin levels.
Hi Flecmac I have autoimmune thyroiditis and fibro and lots of other things over the years. It's all really painful would be nice to feel normal whatever that is... I've forgotten
Hi Flecmec. I also have autoimmune thyroiditis. Every time I had my T4 reduced I ended up with body pain, which went away when the dose would be raised again. Different doctors cycled through this and with the last reduction the pain stayed even after Levo was increased. Nurse practioner also added Lio, but no success. GP said it's fibro and no Hashimoto's (despite elevated Tgab). Rheumatologist says it's not fibro. but the thyroid. Very confusing! Either way, I'm in constant pain. Since you are here, I assume you have fibro and autoimmune thyroiditis? Or is the thyroid causing you pain? I'm trying to sort all this out for myself.
Like you, I was diagnosed with Fibromyalgia, not tested for anything else, just told no cure. I never believed I had fibro. I eventually suggested Thyroid and saw a private endocrinologist who said I definitely had hypothyroidism. His report told my GP to start 75mcg Levothyroxine. GP eventually said dose too high and reduced to 25mcg. I became very Ill and increased. However Levothyroxine alone didn’t seem enough. I am now with an NHS endocrinologist and he eventually did a trial of a combination Liothyronine/Levothyroxine which I am still taking. Autoimmune Thyroiditis is very difficult to treat, takes time and a good endocrinologist. I am also gluten free. I really hope that you can get the help you need, I feel your pain. Good luck.
I'm afraid that with the up and down neuroplasticity settled on pain, just as it did on tinnitus before that. It sounds like you are doing better now. So there is hope. My nurse practioner has suggested LDN in addition to 88mcg Levo and 10mcg Lio. So far I was reluctant to go for the LDN (although, it supposedly would be good if I had fibro), because I think I'm getting tired of experiments with my body. It is a rollercoaster and I start to give up after over 50 years of doctors' opinions all over the place and me being pulled back and forth like the robe in a tug-a-war. Thanks for responding to me, though. 
I don’t really know much about LDN. Was this offered on the NHS? I still struggle, but don’t know what else I could do especially on NHS, like you I’ve spent too many years trying. It really is like a tug of war! If you haven’t tried an endocrinologist maybe that could help even if only to make sure your thyroid medication doses are sufficient. The right vitamins are also very important.
No, I'm in Canada and I have seen many endos. The best one closed practice and the whole thing started over again. So I started to pay to see the NP. She saw that my T3 was way low (sometimes below range) and put me on T3. Generally felt better but the pain did not go away. Most docs go by TSH only and will lower meds if value is below (even by 0.02) range regardless of the consequences for the patient. Also, most test for TPO (which I don't have) only and deny that I have Hashi despite elevated TGab. And then diagnose either depression or fibro. It's like running in circles. So the NP suggested LDN, maybe just for a short time, to retrain my brain. So, that's my story. I used to be such a "good" patient, but eventually I had enough and became an "annoying" patient. 
Doctors don't like me anymore.
It seems like the problem is worldwide. I have looked into LDN and apparently it is good for those with Hashimoto’s, so maybe could be good. Doctors don’t seem to know anything about thyroid disease! I hope you find some relief. 😊
my first person to say it was also a physio, she told my GP then he sent me to the consultant
There you go, you live and learn. Never heard of it before.
Lets hope the physio of painisapain informs their GP. But the fact still remains to be told there was no help for fibro showed a great lack of understanding on that physios part.
The physio I first saw told me they had never heard of it.
Do you have fm I disagree w your understanding
Hi, yes I certainly do have fibro. I have had it for 40years diagnosed for over 30 years. In that time I was diagnose on two separate occasions by a rheumatologist. First time also dagnosed with CFS along with the fibro.
I am sure plenty of people disagree with each others thoughts. I may disagree with your thoughts. That does not make one right and the other wrong. It may mean we have seen things from a different perspective. And travelled a different road.
DizzytwoModerator
Hi, I would still speak to your GP. There are meds that are given to help fibro symptoms.
They don't work for some but do help others. You could also ask about a pain management referral.
Again the physio is not placed to offer you that kind of help by making referrals or giving you medication. To be honest reading the remarks made by the physio they seem to have little or no knowledge of fibro at all.
There is help and support out there. But you would need to talk about it with your GP.
Hi PainspainsWelcome.
Sorry to hear you feel this way.
Yes, Maybe ask for a formal diagnosis.
If fibro is confirmed there are many hints and tips for living with the condition on this site. It can be shocking to be told you have a condition that won't go but you can make adjustments that make a difference.
I wish you well on your journey
Gigi
welcome to our club!!! I had a GP tell me, there are GP's who dont believe this is real and i am one of them, good bye, I had a consultant at the pain management clinic who said that a lignocaine infusion (cocktail of very powerful drugs designed to last approx 9 months) was the best thing for me, i had this, i had to go into hospital for the day, they gave it through a syringe driver and a nurse had to sit with me the whole time monitoring my blood pressure every 3 minutes for the first 20 mins, then every 5 mins after that. at one point she went running for the consultant who came back with her looking very worried, something had obviously happened to my blood pressure, he just kept asking me if i felt ok and stopped the rest of the treatment. a couple of days later i couldnt keep my eyes open, i had to rest to the point where i couldnt even sit up, for a whole week i couldnt sit, stand or walk, after that i could only do about 10 mins a day of normal daily activity, that was 1/11/16 by 2020 i had managed to get that up to about 11/2 - 2 hours a day, I went back to the pain management clinic and all the consultant said was, ask them at the pain management clinic (this is a day where physio, psychologists etc, tell you what they can offer) , they will know more about it than i do, i asked them and they said you will have to ask the consultant. So if they offer you this i strongly suggest that you dont have it, i have also spoken to others who have had a similar reaction to this.
Oh wow, and was this to specificaly deal with fibro and nothing else? May I ask which part of the UK you are in?
I only ask because you seem to be getting treatments and diagnoses I have never hear mention from any other member before.
Ah ive just re read your reply. Was the physio who diagnosed you part of the pain management team?
It is a valid treatment in the UK and a bit of a post code lottery. Will only be given to patients that have exhausted conventional treatments. Does not work for everyone but if you search on here you will find people that swear by their (ligno/lidocaine) infusions. I know of people travelling from the south east cost of England to the Lake district so that they can continue their treatment.
There are risks with all treatments and as it is an infusion with a potent drug it is done under supervision.
the physio worked at my GP practice, the treatment was for Fibro, i also have chronic fatigue and after the diagnosis for fibro and chronic fatigue i also have spinal damage, all the nerves in my neck are mangled due to 27 years of lifting my mother who was paralysed from the chest down, from the bed to the wheelchair, from the wheelchair to the car and vice versa. having had a bad back since i was 14 the district nurse said that if my mother put her arms around my neck and i hauled her to her feet hanging on my neck it wouldnt hurt my back to lift her (because they didnt want to send anybody out to get her up, they came in daily for 27 years to dress pressure sores, but wouldnt help get her up
I am in Leicestershire, the physio who diagnosed it originally worked at my GP surgery, it was just for fibro, i also have chronic fatigue, spinal damage, all the nerves in my neck are mangled from lifting my mother in and out of bed/wheelchair/car etc for 27 years
Omg, that sounds horrid, I have never heard of it either. Sounds almost like you were being a Guinea pig! Fibromyalgia and CFS/ME (my GP won’t event utter the later, even though fully in NICE Guidelines , I find that ignorant) I do feel sometimes used as a bucket diagnosis when there is obvious other symptoms beyond going on and basic tests come back normal.
Obviously so many do have, but once given diagnosis mostly it’s almost impossible to come across a Dr, Consultant etc to look beyond.
Fibromyalgia diagnosis is definitely something best done by a Rheumy.
X
not a Guinea pig as this is a legitimate treatment that some really benefit from.
In what country or area as never come across or heard of here.
The UK but as of maybe 2-3 years ago some CCGs were reducing or removing the service on the basis of evidence levels but more cynical heads were saying costs as people were benefiting previously. It does have a significant cost as an anaesthetist is required to administer it IIRC.
This is just one story - dailyrecord.co.uk/news/loca...
But it does not work for all.
Thank you. Is the treatment literally for pain ..FIBRO? I’ll try and have a read.
i am in Leicestershire
I also had a lignocaine infusion as recommended by a consultant and my experience was very similar to your except my blood pressure didn’t rocket, I just felt unbelievably nauseous. I couldn’t wait for the darned infusion to be stopped as I felt so ill! Like you, I was very wobbly on my legs and when my husband came to pick me up I just said to him to get me out of there as fast as possible! On top of all that, it didn’t work either! PS I live in Scotland
mine didnt work at all except for the side effects which I am still having 6 years later
I hadn’t thought about the long lasting effects of the infusion, but it certainly would explain a lot!
YassytinaFMA UK Volunteer
Hello, yes being in constant pain each day is very wearing , I hope you can see your GP in order too get you the right help, some good advice from Dizzytwo and other members, Trial and error sometimes trying different meds but if your doc can find one that helps with your pain would be beneficial. I take duloxtene and sometimes Codiene. I do find pacing as much as I can does help and even talking here on the forum keeps me positive, some good people here we are joined by this unwanted condition Take care x
I have fibro and chronic fatigue
Hi there, unfortunately there are some medical professionals who are ignorant of the illness. I recently saw a pain consultant who literally said there was nothing more they can do, I was so upset, my gp referred me back but I have now been put off going.I have learnt that although the meds help a little, pacing myself helps alot. Learning how to change my lifestyle over the years has helped. I feel that if I am out in the cold for a longer period I flare n also repetitive movements. Speak to your gp about your medication and then try to see what works for you with regards to pacing yourself xx
Hi, sorry you have had this diagnosis. Unfortunately I think that some medical professionals are so used to fixing people they struggle with conditions that they can’t cure.
Do go back to your GP especially if you are open to the idea of taking medications. But my main advice would be to do your research and educate yourself about fibro as much as possible. There is lots of helpful information on here. Perhaps do a bit of surfing before you go to the GP so you are prepared for what you might want to ask.
Many of us find lifestyle changes, pacing, gentle exercise, meditation, heat packs etc can be really helpful. There are definitely things you can do to help yourself manage the condition, but different things work for different people so sometimes there is a bit of trial and error needed to see what works for you.
Sorry here this I no what u are going through nines got worse after two years has I got told it was sciatica but has spreading . My phsioist said to me it could be fibro has she has dealt with this in America and is realy bad over there . So yes this can be true ut only if they no about the condition . She asked me what was my pain was like and areas and I mentioned I'm sensitive to touch . Doctors will ask u all this . But they will do all tests and blood will come back normal has there is no blood test and if all other test come back should be the same and that's how they no . U will get referred to pain clinic and rheumatology referral . Hope this helps . Take care xx
'Fibromyalgia' is the name given to a constellation of symptoms, not a diagnosis of a disease as such. This constellation of symptoms can be produced by a large number of possible underlying causes, and even by a combination of those causes.
So far, it seems to me, nobody has been able to come up with a way to diagnose the underlying cause/s definitively. This may be because they are many and diverse and because no-one is sure how the symptoms are produced by these underlying causes.
It isn't true that nothing can be done. One of the most obvious things to be done is to screen you for underlying causes that CAN be treated. This is usually done before or round the time the diagnosis is being made eg via blood tests and various forms of imaging like xrays or MRIs.
Your physio obviously cannot arrange these investigations and so is not the best medical professional to make a firm diagnosis. However, physios are fantastic at picking up on things that GPs miss (maybe we talk more freely to our physios). I wouldn't dismiss your physio's suggestion, just use it as a good starting point. Get a GPs opinion. and try to see a rheumatologist, who can run you through some investigations to rule out diseases that can be treated.
If you are a woman, it is also worth consulting a GP who has a special interest in perimenopause and menopause, and don't think 'Oh, I'm too young'. Check out Dr Louise Newson's website at:
Admin: removed link
up until 2016 the ACR criteria for fibromyalgia restricted diagnosis of fibromyalgia if another condition was present. Many conditions can have differential diagnoses or be misdiagnosed. You could say most conditions are a constellation of symptoms as well.
There is a great amount of research not least since the original 1990 ACR criteria that gave us a diagnostic criteria. That has evolved to the point that we now have the symptoms of fibromyalgia also being accepted for the first time as part of the definition of a new classification of pain i.e. nociplastic pain. So I would take issue with some of your opening statements but I do agree there are treatment options available to people. These are difficult to target whether they are talking therapies or pharma options as they do not work for all.
There appears to be a lot of talk around peri / menopause and treatments and it is a significant area if it applies to you and worth checking out if you believe it could be a factor. When it is a factor it can derail your existing fibro treatments and force a reset on your program for a period of time. But, it is not a simple and overlooked solution that will resolve all ills unfortunately. When it does get discussed there seems to be more people that have already ruled it out or treatments have no impact. But, if it is a factor that can be improved then it can be a differential or a variable that can be affected and bring significant quality of life improvement.
Hi , I've bee. Told that apart firm medication the ideal treatment is talking therapies. Because it's more of a neurotical condition . I was referred to a pain management service which helped . Take care of yourself . A positive mind set can help even in the worst of times when pain is high .
Sorry to hear about the mess you are in. I would never trust a Physio again after one gave me a treatment pressing on my spine. She meant well (she was a nice woman I knew from choir) but it gave me extra pain and did nothing. My go to treatments are traditional Chinese Acupuncture with Five Elements and 'proper' Chiropractic. I can get reactions from both but that settles down. I get healing and sustaining benefit from these treatments because they raise energy and release blocks and we have built up trust over the years. I could tell the difference when not going to either during lockdown. From my point of view after an acupuncture treatment I had from another one I would say do not ever get acupuncture from a physio either. It's a completely different technique based on trigger points and they do not have the ability to read all the pulses in the wrist for clues as to where the weakness is in the body. - If I can walk now, it is because my chosen therapists were there to sort me out when my hips, back, neck and headaches were incredibly painful and I could hardly move. I am very, very lucky because I can more or less afford to have these treatments.- My husband is not so well at the moment, nor my son, so I've been doing the majority of the housework, cooking and gardening plus clearing and sorting things that really have to be done so my kids are not left with it if I snuff it! I have confidence to do this because I found the right therapists. I just don't push my luck too much. - You have to rest if you get a flare, there is no other option. - Hope this gets properly sorted out for you soon and you get the help you need. There is hope and there are sometimes small remissions.
Hi my physio sent a letter to my GP asking for me to see a Rheumatologist. So glad she did as I was diagnosed with fibromyalgia. I also have stenosis osteoarthritis and other things .I also like acupuncture helps alittle.
The idea that physio would diagnose fibromyalgia is notall that strange. Many physios have years, and years, of practical
experience simply because they work with the human body, so they can tell, by the symptoms, what the problem is.
After all a good professional physio has been trained to treat specific conditions, therefore they must be able to recognize them in a patient, too. So, I do not find it all that strange that you had your diagnosis made by a physio.
Some know more about such condition, than a GP simply from practical experience. It i also true that there are some poorly qualified physios about, I met one or two in the past, so it is a good idea to have such diagnosis confirmed by GP and/or rheumatologist, too.
But, unfortunately I doubt if they will have much more positive to say about the treatment for fibromyalgia. BY treatment I mean the cure for the condition, because the fact is, at the moment, there is no cure.
Lidocaine is simply a strong narcotic type painkiller, and will help for a while, but it will not cure you from fibromyalgia. The only way we can get some relief is by learning more abut it, listening to our body and observing what works for each person.
For example I found that my fibromyalgia is better in summer, when it is warm and dry, and worse in winter especially before spells of bad weather. So I try to plan bigger tasks at home for summer months. I have also found that exercise can make me much worse, not better. That I must never, ever push myself, because if a I do, the flare ups will last much longer.
Pacing any physical activity is important, if inconvenient, as I need to stop, and rest at frequent intervals whatever I do, BEFORE getting too tired.
The best of all is a warm, but not too hot, soak in the bath. This is most effective and natural home treatment for fibromyalgia, for me. But before you do, you must talk to your GP, because it might not be suitable for you, if you have any heart condition for example.
I have a supportive GP, and she is also a highly qualified trainer of new GPs, and she tells me that there is no treatment for fibro, only individual management of symptoms, such as changes in your lifestyle. This, together with a moderate use of strong painkiller (like codeine) when pain is at its worst, will make living with fibro more bearable.
The most difficult part is that fibro often comes with symptoms of constant fatigue, so you are exhausted all the time. With all this it is possible to find ways of coping, and so acceptance of the limits of this condition instead of false hopes of a "cure", is important.
It is very important to find some distractions, when there are bad days, so we do not constantly concentrate on pain.
It is possible to have a life after fibromyalgia diagnosis, but it will be different life, than we had before. We can appreciate better days between flare ups, so much more. Enjoy every happy moment, find joy in little things. Life can still be wonderful. And stay with us, we are all in the same boat, so we understand your frustration. Visit often
I have a very supportive GP
Hello i am new to the sight . I have just read your post , as a long term fibro sufferer also i find exercise , dance , swimming and relaxation oh! and a coffee seems to help with the constant pain , to be honest i can't remember not feeling tired and in pain as it has been such a long time . I find i just move a lot to keep my mind occupied its when i sit or lay down for a while , i am like someone of a very old age getting up , i walk bent over and in pain with my hips , knees , then once i am moving it becomes better . Does anyone else feel like this ? I don't take any pain relieve however as i said before i use exercise and a coffee works for me ? Anyone got any research on that factor Xx
Hi there and welcome. May I suggest if you have question or a query that you start a seperate post. That would be best rather than placing a question for help or advice into a post made by another member thank you 🤗🤗
Hi
Excellent you do a lot of exercise and distract yourself from pain by keeping your mind occupied.
I don’t have fibro, which is a term that they use when they can’t find, after many investigations, anything they can give you a definite diagnosis for.
However, I am a lifelong keen exerciser, and a few years ago got ‘fatigue’ which was not the usual tiredness after exercise - something else.
So, had a Medichecks done which showed over range TSH. And I have been taking Levo which certainly helps.
What I have found also helps me exercise better are Guaifenesin and Stinging Nettles!
Agreed, the guaifenesin is primarily used for excess mucus, but it helps me run faster for sure.
And, Stinging Nettles - I found this out by pure chance - I had parked my car in a field against some bushes, to meet my Sunday trek group - and accidentally brushed my calves up against nettles at the back of the car!
And, yes it was stingy - but I had a great trek with my mates that day. And have used Nettles every Sunday since then.
All the best!
Persevere99
i feel for you 😔..i hd bouts of pain & muscle spasms and sore pressure points fr ova 3 yrs and finally it was labelled as fibromyalgia ...ive tried a cocktail of prescription drugs as well as herbal therapies acupuncture masagge hydrotherapy and its all just vry short term relief if that sometimes ...its caused me anxiety depression & memory fog ...hope u find some relief soon warm hugs !
I am terribly sorry for your pain and the diagnosis. While there are some treatments for Fm, I have not found any that work all the time, for all the pain, brain fog, etc. Yoga helps - gentle stretching and mindfulness. I know, it sounds like crap, but it does help me. I don't always do it but when I do, I feel better. Other things that work for me - limiting my alcohol intake. While a G&T seems to help in the short term, it also exacerbates my symptoms, especially the neuropathy in my feet. Getting even a little bit of exercise each day - walking even a quarter mile with my pup makes me feel better and gets me moving. Keeping a positive outlook - yeah, I've been know to throw myself a pity party from time to time but overall, I try to look for the good in each day. Some days, getting out of bed is medal-worthy! Having a strong, compassionate, and understanding support system is also critical for me. I struggle with feeling guilty for the things I am unable to do around the house, or with friends.
The hardest part for me in the two years since I was diagnosed has been learning and ACCEPTING my limitations, physical and mental. I have always been very type A and the transition has not been easy for me.
Sending hugs from New Mexico, USA.
I’ve been given patches and liquid morphine. I can’t take the morphine, makes me sickly but the patches help.
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