I've recently been diagnosed with fybromyalgia had symptoms for 4 years.
I am very confused by people's reaction. I've been told it's all in the head. It's made up like m.e. It's just being lazy. It can't be seen on blood test or xray. Saw doctor recently as I am in so much pain and I am already on co codamol and tramadol which are not working. He just gave me a withering look and hardly responded. The practice nurse said most doctors don't think fybromyalgia is a real illness. Well it sure feels real to me. I have had no sympathy. I am in constant pain totally exhausted and can't think straight.
Confused ! ! !
Written by
Ssst
To view profiles and participate in discussions please or .
Yes, I was once told by a practice nurse that it was just given out when doctors don't know what's up with you. It does actually have an ICD code now and is recognised by the World Health Organisation. It's also recognised as a disability. I've been told I've got: stress, depression, post-viral fatigue, 'some kind of virus' and that if I ate better, took anti-depressants, exercised more etc etc I'd be better....
Don't worry we've all been there and I just tell nurses/docs who look skeptical that it's comes under rheumatic disease code M79.7 if they're confused... that shut up the last GP I saw who asked why I was on so many tablets (as if I take them for fun)! x
listed in ICD 11 icd.who.int/browse11/l-m/en... under MG30.01. This will be its new classification but there is some other changes potentially coming to its classification. I believe this new code is that it is not really an MSK condition.
Also it was always a disability but as with many things, peoples awareness or appreciation of it varies.
H ya....long time ago, i thought fibro was a made up illness for the lame and lazy at work, giving them an excuse to basically do what they want as they were always ill with tired ness etc... my thoughts were go to bed n sleep then. However, having been diagnosed myself, i now realise what a stupid t**t i was. i have good days, i have bad days, and then there are the days that you lay in bed contemplating peeing yourself in bed because you just cannot get up through pain, stiffness etc. I wish someone had beaten me around the head with a bag of their medications.
I now realise that all sufferers of fibro, suffer with different aspects of the condition, they suffer a lot in silence never brining it to the forefront through fear or ridicule from work colleagues such as my experience, never reveal their condition as their income / job is so important and shrug it off....
Were all in the same boat trying to get along with a condition with no cure, trying to do what ever we can when ever.
There is a superb wealth of information here to which everyone who has repleid to me have been SO helpful. Take care, Peder XxX (a slightly ashamed and remorseful fibro sufferer).
Many many years ago (about 30+ years ago when I knew no better) a colleague I worked with went off sick for about a year with ME which was seen then as yuppy flu. We all thought she was taking the mick until I saw her once in a local shopping centre in a wheelchair, she could barely walk and she looked dreadful. I changed my views there and then. I do think ME, chronic fatigue syndrome and fibromyalgia are all connected.
I think you are right there. I have had M.E. for 23 yrs and fibro to for 2yrs, they are so similar but the pain is stronger with fibro. It is devastating and life changing.
Hi can I ask how do you know you have ME? My family thought I had this for years but I have fibromyalgia, recently diagnosed. Is there a specific test for ME? x
No specific test just based on lead up and symptoms. I had Whooping cough when I was forty, fractured some ribs coughing, worked whilst in pain them collapsed in the doctors surgery. The Locum GP that I saw was excellent, she said if I recovered in 6 to 12 months it was post viral, if it went on longer it was M.E. This was before the CFS title was used. It took years to get back on my feet only to collapse time and time again. The pain is increased this time and I don't function well, I also need an electric buggy to get around on my good days. The Rheumatoid doc says I have both now!!!! I am 63years !!!!!! I hope you get some relief, all the very best for the future. I will answer any questions.😊
more doctors appreciate fibro nowadays but it is a continuing battle to raise awareness within the medical profession and outside of it. Whenever someone within the medical professional questions it then point out that it is their duty to keep up to date and NHS choices has a large section on the condition which has been compiled from good quality sources ans published by their employer.
to be honest best use of your energy is to find a HCP that will work with you and be a positive change rather than focus on those that need their education improved.
The first international conference on fascia was in 2007 at Harvard medical School. Fascia may have an influence on pain in some or many people. There are thousands of nerve endings in fascia. Fascia has contractile elements which can contract and relax.
Blood test or xray cannot pick up issues caused by muscles or fascia. MRI scans can pick up some tissue relationship issues, but cannot determine if muscle behaviour is causing pressure to be applied to places that do not like it.
You need to see people who engage in working with sensitive hands. This is usually in the complementary medicine department. it boils down to networking and finding out who can be recommended in your local area.
Might be worth listening to a 40 minute talk on evidence based medicine which has three chapters. It has some useful stuff in it with which to use with the doctors.
The talk does refer to more investigation needed into the physical therapies.
You say: "I've been told it's all in the head. " There is a lot of truth in that. We need to gain skills to investigate the chronic condition. We need skills to determine the brain influence on the problem and modifications in the way we do things to enable improvement in quality of life.
This talk on Alexander technique is worth listening to
not sure fascia has been implicated in fibro but SFN in the fingers was in a study in the last couple of years. MPS has overlap with fibro so there is some relevance with this. Alexander technique may provide you some relief but it may not help the majority as it applies to MSK conditions primarily and looks at muscles and development which may not apply to fibro, As with any manipulative therapy people need to be careful of rebound pain effect and whether it fits their bodies limitations.
A medical trial gives a population of results. People lie on the population spread of statistical results. The non-repeatability of many medical trials is a serious problem.
The way diagnoses is done is a serious problem. The lack of system engineering understanding and lack of understanding of the body's feedback systems are serious problems in medicine. A large number of diagnoses of a particular name are given, but may not be this particular condition.
If you have a major stressor called a chronic health disability you cannot change this. The stress is too big. What you need is to be able to reduce the other stresses which can be worked on and reduced. By doing this you move away from the stress breakdown point.
You say: "it may not help the majority as it applies to MSK conditions primarily and looks at muscles and development which may not apply to fibro," I agree with what you say. When I had the after effects of the broken wrist and other intense burning sensations across my front and back Alexander could do nothing about that. The Alexander Technique skills did enable me to keep from falling more apart than other wise. It enabled me to keep being able to do things which without it I would not be able to do. It also enabled me to prevent the condition from being worse than otherwise. I was able to use other techniques to bring the burning back under control. Without the Alexander knowledge I doubt if I would have been able to use the other techniques.
A stressor like fibro affects the whole body as a result of brain body interactions. The Alexander Technique skills helps reduce the effects on the whole body.
You say: "As with any manipulative therapy people need to be careful of rebound pain effect and whether it fits their bodies limitations." I agree with you here. This relies very heavily on the skill, Knowledge and sensitivity of the manipulator. It is also depends on the skill set that the patient has. There is a major difference between a physiotherapist working privately who treats the whole body and an NHS physiotherapist who does one size fits all. The sensitivity of physiotherapists varies enormously.
Small fibre neuropathy cannot be treated by Alexander Technique lessons. However, Alexander Technique will change how the body is used so that over all stress will be reduced. This will make a difference to quality of life.
The stresses on the feet in Small fibre neuropathy could be reduced by better balance learnt from Alexander Technique lessons. Also if the body core muscles are producing power movements and the periphery muscles are not over contracted there is a vast difference in function. Many people have a tendency to try and use periphery muscles to do things when it is more effective to use the core. This does not matter when you do not have a chronic health disability. It makes a lot of difference to quality of life when a health disability is present. Using the most effective muscles to do a task reduces the total strain on the body.
I hope I have been able to address your concerns. Each person must do their own investigation. Different things work at different times. Sometimes a number of things need to be done in parallel to be effective whereas a single technique by itself will not work.
Hello Ssst and welcome to the forum. In the future you may wish to lock your posts in order to protect your and other members privacy, here is a link, healthunlocked.com/fibromya...
You will find lot's of information on our website here, fmauk.org/
Sadly some people think it's a made up condition but we all know it's not. Having to live with it day in and day out. Please do not hesitate to ask the admin any questions you may have.
I was told the same thing by GP in my old practice told me no such thing made up illness stop doing research etc and did the eye roll . My new practice the GP I usually see is understanding she sent me to rheumatology for diagnosis thinking it polymyalgia rheumatica . When I was told it was actually fibromyalgia I was devastated remembered what old GP said it's made up all in your head etc my ex husband said it's because your fat lose weight and you get better your mad need to be sectioned and one of the last things he said was I enjoyed ill health. I drove home from the app crying . The doctor that diagnosed me said it is recognised not much known and the best advice was to join the sites where you can get advice from fellow sufferer's . But I still feel a fraud even my youngest whose a nurse in itu said his registrar says it's highly controversial subject . My son is my carer and since divorce I live with him . So both him and his girlfriend have seen the state I'm in some days . There needs to be more training on this subject for doctor's and nurse training the physio in my local practice said she has attended courses on the subject recently said it does exist is recognised but due to funding in NHS there's not enough money unlike America where it's private health they have more money to throw at research . Good luck if your unhappy with GP is changing an option I moved to a different village and was lucky to have found a good one . Xxx
This attitude from professionals???? makes me so annoyed. I was diagnosed 3 years ago by a very understanding Rhume now when I see gp's I'm afraid to mention the Fibro word. It certainly isn't right. This illness has changed my life completely and I hate it. 😕
Others will enjoy to mess with your head and perception of reality. Is you pain real? Is it? Are you sure? And after years of others doubting you, will you still be sure? Or will you be a little messed up?
Is this the best modern medicine can offer?
We desperately need answers. Years of denial by Drs hasn't cured us. There must be a better approach.
I suggest educating yourself. There is lots online to read.
The only people who truly understand fybromylagia are us the sufferers.Docs will just palm you of with different meds to try but that's just to get rid of you so they can deal with I'll people!
I was diagnosed with Fibromyalgia about 8 years ago and they thought it was rhuematoid arthritis at first and medicated me with Methotrexate and Sulfazine, really horrible drugs and then years of anti depressants (supposed to help) and endless type of painkillers which have resulted in a 41cm hiatus hernia to only find out 4 weeks ago i have Chronic Lyme Disease and not Fibromyalgia, my head is all over the place. If the doctors can't get it right what chance do us mere mortals have. Please go to a different doctor, even joining a new practice if possible, you know the changes in your body and how its affecting your life, they walk away in their healthy bodies and don't give us a second thought. It was me that saw a piece on line on how often Fibro is wrongly diagnosed when people have Lyme Disease as symptons are similar but again unless docs see a rash, (70% dont get a rash or even remember a tick bite as they can be size of a poppy seed) its hard to get treated, mine is now Chronic Lyme Disease and am waiting results of blood test. Luckily for me, this time, doc listened to what i found and has begun process. Frightens me that had i never read that piece on line i would have lived like this forever, i can't be cured now as it has been left too long but might be able to try massive doses of certain anti-biotics. If you can, i would think of going private.
Your life is worth alot, dont let doctors think that your not by their dismissive views.
My heart goes out to you. I have seen my share of insensitive doctors over the last 27yrs and had insensitive people come and go talk behind my back saving hurtful things. Just know this that one day they will feel your pain that their insensitivity has caused you. You have come to the right place to find a fibro friendly doctor. I live in the US and there is an organization called fibromyalgia network where patients recommend good doctors in their area. I moved around a lot so I went through my share of bad doctor’s before finding a good doctor each time I moved I used the fibromyalgia network to get a list of good doctors who were in the area. I don’t know if the U.K. has them or equivalent organization? But people on this site would know how to hook you up with a good fibro friendly doctor. 😊💕🦋
Unfortunately you'll get used to people's poor attitudes and ignorance about fibromyalgia. I'm no longer surprised by how apathetic health professionals are about the condition. It gets on my nerves as if we don't have enough to deal with.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
it that it knowing ! That people make assumptions! 
not having another good day.
Confused 
Miss ELISA 
No test
