I was diagnosed with fibro 3 years ago. After having a bad week I made an appointment to see my doctor but cold only see a nurse practitioner who has now told me that fibro is a mental health condition and was re named 10 years ago and was previously called ME is this true . I had used the NHS website to look up certain information but was told by this nurse not to use the website as it has false and misleading information I am at the point where I don't know who to believe and have no faith in the NHS anymore am I the only one
Is fibromyalgia a mental health problem - Fibromyalgia Acti...
Is fibromyalgia a mental health problem
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Pdady
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As far as I'm aware ME which often results after an illness or virus and has now been renamed Chronic Fatigue Syndrome or CFS for short, and Fibro are distinct conditions, there is some overlap in symptoms but rule of thumb is Fibro causes more widespread pain, CFS is often crushing fatigue. Neither are mental health conditions.
They are real, physical disorders. They can both cause anxiety and depression, but so can any chronic condition, I defy anyone not to be depressed or anxious when they get strange, new symptoms and their body no longer works properly.
The nurse sounds frighteningly ignorant and that's putting it kindly. The NHS website has always been a reliable source of information. More so than ill educated medics. Avoid.
As an ill- educated medic (retired Nurse), I agree. I also have Fibro.
Cheers, Midori
same here!
Agree with above. I've had both and yes of course they have an effect on our mental health being fatigued and in great pain does that.
hi, I am not sure where she got her information from, with fm we can suffer anxiety depression, but to have it renamed a mental health condition erm no I don’t think so. desquinn can you or another member of the admin team explain this a bit better, im having a foggy day. Thank you.
Pdady sorry I couldn’t explain better, but rest assured you will get the correct explanation on here. I have tagged admin for you. As my brain isn’t working today Take care.
Thanks for your reply I know how you feel been foggy for a while now. I tried to explain how it eventually runs you down to the point of a nervous breakdown and that was the response I got from the nurse. It's got to the point now where I've given up with my doctor as they don't really understand fibro and what it's doing to me. Hope you pull through soon Thanks
LisaSnowFMA UK Volunteer
Short answer is, no, fibromyalgia is not a mental health disorder. Can it increase the risk of mental health problems? Yes, the pain, fatigue, and poor sleep quality associated with fibromyalgia can interfere with your ability to function at 100%. The frustration of dealing with an often-misunderstood condition can also result in depression and health-related anxiety.
This highlights the importance of self care and symptoms management using lifestyle changes and healthy diet, in addition to appropriately prescribed pharmaceutical agents to control pain and other symptoms.
Hazel_AngelstarAdministratorFMA UK Staff
As already mentioned, fibromyalgia is not a mental health condition however living with a chronic health condition can affect your mental health. Also it's not the same condition as ME, although symptoms overlap
Also, I'm speechless at her comment regarding the NHS website - which does contain accurate information (although sometimes slightly out of date with updates). You can also find information on our website fmauk.org and our patient information booklets at fmauk.org/publications
I would also suggest arranging for a copy of our health professionals booklet to be sent to this nurse (fmauk.org/gprequest) - as she definitely needs educating
Thank you that's what I thought if you would like to respond to practice nurse Bryany coxling slieghts surgery whitby North Yorkshire please do as I have give up with them all together there is only so much attitude I can take from these doctors. I will use this service from now on many thanks Paul
I'll arrange for a pack to be sent out (it goes anonymous, so they will not know you requested it)
No! No! No!Although my doctor persuaded me to do a mental health assessment! The person who do it was astonished, as I had recently lost my mother to cancer, and she said they wouldn't even think of diagnosing anyone so close to a bereavement.
There is still so much misinformation amongst health professionals, it's astonishing!
Hi PD.
Fibro is a syndrome & it may have its roots in pain but it does affect our mental health too , how can it not.
Years on I still get angry with myself for not being able to lift & carry the weight of shopping bags & it's a natural knock on affect & that's important to recognise & make sure U deal with both mental & physical & best way I find if I'm in pain I read & learn something new & when I'm not in pain I try get out & about . I mean once I was in so much pain from over doing it I was unable to hold or carry a 1kg bag of sugar .
I agree the NHS is a great & reliable source BUT they only tell U what their text books say & nothing more & each of us suffer in different ways. So if U do feel urself getting angry do some mindfulness breathing to help U calm down works for me but its taken a lot of practice to get to where I am.
I would suggest the nurse do some reading. Pubmed will show how many clinical studies have been done on fibromyalgia that yielded tangible data and then I would complain in writing to the practise manager. I think it's appalling how you have been treated.
I am disgusted.Perhaps that Nurse needs to stop telling people to keep away from her employers website and actually bother to look at it herself.
The Doctor , whom also probably influenced the Nurse in her opinion on patients educating themselves could also do with go backing to school , or retiring .
I think you need to put in a complaint about this , not at surgery level , but at area level , to ensure that the local medical admin gets to know of this surgeries lack of knowledge. Second , print off some of the Fibromyalgia pamphlet notes from the society and take them in to give to the surgery suggesting that you wanted to help them by providing the information.
Fibromyalgia and M.E/ CFS are two different conditions .
Only medical professionals that don't want to believe in up to date information believe they are the same thing , or are just Mental Health related , or what they seem to be implying " in your head".
You can have Fibromyalgia or M.E/CFS alone , but sometimes you can have both conditions together which can make the ability to control the pain of Fibro more complicated.
Fibromyalgia is sometimes misdiagnosed as Chronic Fatigue Syndrome or Chronic Regional Pain Syndrome , because it has some overlapping symptoms.
Fibromyalgia can also occur or develop alongside Chronic Migraine Syndrome , CRPS, Dysautonomia, P.O.T.S and Hypermobility related disorders .
Other long term illnesses can trigger Fibro .
Fibromyalgia is classed as a Disability .
The causes of Fibromyalgia, which is largely related to Autonomic Nervous system dysfunction, can be different for each individual but can be autoinflammatory or autoimmune , and may be triggered by an extended period of stress or trauma in the body , or brain, from things including after injury , infection , surgery , pain and inflammation related to other chronic health conditions , overwork , overactivity to name a few.
Fibromyalgia is a condition that effects the small fibre neuropathy and nerve signalling pathways of the whole body and brain.
It most commonly causes pain at points across the body where small nerves cluster , which can create tender points that have a hypersensitive response to outside stimuli of all different sorts , but particularly touch and pressure and temperature because of the links of these to your Autonomic Nervous System " Fight or Flight' " response.
Other physical issues mainly relate to the autonomic nerve response of the entire body and brain and include Chronic Fatigue , Temperature regulation issues , Palpitations, Tachycardia, Breathlessness, difficulty swallowing, various digestion problems , IBS , hives and rashes , allergy responses , poor circulation , dizziness , migraine , pain when chewing , loss of coordination, confusion , loss of thinking skills , brain fog , Anxiety with no obvious cause , insomnia or oversleeping , sweating , loss of balance , numbness and pins and needles .
Constant overstimulation of the body healing response can also lead commonly to vitamin and mineral deficiencies that can make the symptoms worse and cause other health issues.
And of course , excessive Pain which can inevitably cause an increase of Mental Health issues like feelings of depression , low self esteem , PTSD and detachment issues .
Mental Health becomes an even greater problem when your diagnosis is delayed , overturned , belittled or dismissed .
It is bad enough trying to get the right help and understanding from people with no Medical training. It doesn't help any of us when you get the same ignorance and uneducated response from our Medical Team.
Don't give up on the whole N.H.S. Without it you may not have had a diagnosis. I know I wouldn't , and when you get the right group of people with real knowledge of Fibro they can make the condition easier with the right advice on pacing and physio , nutrition and mental health care.
After educating your current Primary Care provider I would suggest you look to leave them and get on the books of a new local surgery whom have knowledge of Fibro . You could find out which surgery is good in your area by contacting your local Fibromyalgia support group.
I'm so angry on your behalf , and hope you can get better care soon . In the meantime as well as making a complaint , politely but firmly request to see your GP to organise a referral, as it is your right , and request a referral to the Pain Management Clinic and the Physiotherapy departments asking to see someone with experience of treating Fibromyalgia specifically in both referrals,
Keep posting here for whatever help you need and try joining a local support group face to face or in online meetings too.
Morning BlearyeyedEverything you have just explained has hit home with me even though I already new most of if after 3 years of investigation. I will try and explain my situation as you have just brought me to tears. I started noticing changes in my early mid 20s and put it down to arthritis as it was in the family I suffered with IBS and noticed a skin rash on my back and chest which comes up like hives with the heat or hot showers especially at the start of summer my father has the same and have just noticed it on my 15 year old daughter this year. When the rash settles it looks like pigmentation. In my 30s I was tested for arthritis but everything came back normal so I carried on with life but noticed symptoms were getting worse and dragging out more my sister suggested ME and forced me to see my doctor who dismissed that outright I questioned a B deficiency as my mother has pernicious anaemia but was always told I haven't got pernicious anaemia which wasn't the question I was asking only to be told now that I have a folate deficiency B9 . In my early 40s I was struggling to the point I was running myself into the ground from September to March April things would get worse with my body i would have a few days off work and go back revitalised the doctors would tell me to change my job exercise change my diet same old things .at one point a doctor mentioned fibro but said we don't like to diagnose it too early as I was suffering with all those points you have mentioned but was made to feel like a hypochondriac. After changing my job in 2017 due to a bicep tendon opp to a less manual job I was still having the same problem physically so returned to the doctors as they always put it down to the job I was previously doing as it was very physical and was diagnosed a year later with fibro and it's been down hill since then. Since been labelled I felt as if I wasn't getting anywhere with my doctor also my son was fobbed of as he was having trouble with his leg and hip the 3rd summer I took him back to the doctor and pushed the situation as I could tell something wasn't right which the doctor wasn't happy with after a xray reluctantly he was rushed to James Cook hospital two weeks later as they had noticed the ball joint was broken he now has a pin in it and it had caused a lot of damage to muscle and tendon he is now looking at a hip replacement by the time he's 30 he's only 20 now . And my daughter had a opp just after for scoliosis 75 degree bend in the spine which in its self has connections with long term B deficiencies which I feel I may of passed on. so I changed my doctor 3 months ago had blood tests again still low in folate even though I have been taking supplements for the last three years the sed nurse told me I don't have a folate deficiency my folate is just low even though I was diagnosed three years earlier by the previous doctor. All those symptoms you have mentioned have been a part of my life for the last three years and I haven't been able to get back to work I have researched fibro for the last three years and have understood everything you have said but when I put this to a medical professional the conversation gets shut down as I feel they don't like me telling them their job which I got again on Wednesday with this nurse. I received a message yesterday from my GP with a questionnaire asking how they had done to improve the service I left a poor report for nurse crossling . I feel the only thing I can do now is move to a different post code area but I think I would have the same problem as I got nowhere with the pain clinic at James Cook . I feel this condition doesn't get taken seriously because I think I has strong links with certain forms of chemical poisoning if you look at waste chemicals from certain industries and how they affect certain vitamin components and how they can change DNA structures I feel things get covered up and changed from generation to generation. Sorry for the life story but like said so of what you have said hits home with me. but to have all that information been dismissed by those so called professionals gives me no hope I have had more sense from this site than I have from the doctors over the last twenty odd years thank you so much.
I understand how you feel completely, I will send you a message later over private messages if that is alright with you . I have B12 Deficiency Anaemia and other deficiency issues so I might be able to help with some tips on this.I'm just getting ready for a three hour round trip in the car for a 15 minute Echocardiogram appointment so it's going to be a long day!
I will contact you and see if I can help.
One issue that you could look at which could link to your family history is also Reactive Arthritis. Its another poorly diagnosed issue and can link to Fibromyalgia and pain flares but does not automatically show up in ANA tests , even when inflammation occurs.
Do you have Folate deficiency alone , or have you also got B12 deficiency, Anaemia or Vitamin D deficiency?
You can be tested for all of these deficiencies and low levels can increase pain , fatigue and other Fibro symptoms.
Would be great to speak to you as this essay has taken it out of me my gums have just started bleeding .I'm not that good with my phone and tech so bare with me with the private chat bit
The problem here began about 20 years ago. One of the symptoms of depression is often body pain, but the reasons why were simply not understood. A well respected psychiatrist in the US suddenly came up with an article saying that he believed the pain was caused by fibromyalgia. Within two years, the majority of psychiatrists were following his lead but without any empirical evidence. So fibromyalgia was seen as a "side effect" of depression. Except, as other clinical doctors and researchers pointed out ..... "Why are there so many who have fibro who don't have depression?". Subsequently, research proved that the only connection between fibromyalgia and mental health is that for some people years of living with constant pain, and the inability to often live a "normal" life, can understandably cause depression. Psychiatrists are now not permitted to diagnose fibromyalgia both in the UK and US - they are required to refer their patients to a rheumatologist or other appropriate medical professional for clinical diagnosis. Gradually, the erroneous past beliefs will disappear ..... But, it is so darn irritating and saddening when it raises its daft head again.
I have a complex diagnosis of Chronic Pain Syndrome with Fibromyalgia, Post-Vital Chronic Fatigue Syndrome /ME and Osteoarthritis. Over 13 years of these diagnoses, the only one never questioned by various members of the NHS was the arthritis, because there was visible evidence on X-Ray.One GP, seeing my upset and self-doubt, put my mind at rest with the Fibro diagnosis, by saying "Yes. It IS all in your head, because that's where the body actually feels the pain."
Please don't doubt what you feel. That is your truth.
Be kind to yourself and, if you ever suffer from self-doubt, just come back to this site for support.... And, next time someone in the NHS tries to persuade you that it's all in your 'mind', ask if they know the difference between pain and nociception.
I wish you a gentle day,
Dee
Thanks deeI understand where you're coming from. I thought I had got to grasp with the fibro and understood the condition but it throws me when something new arrisses and the doctors dismiss things I'm so glad I found this site . As for having a gentle day I think my day is done now exhausted after my reply to Blearyeyed but thank you all so much for your help
hi I recently attended a physio appointment for fibro and the physio asked me what I thought I would get out of physio as fibro is a cognitive behaviour condition to do with the brain and a phsychiatrist should be seen for this. I was rather surprised that most nhs people just push us aside as they don’t know how to treat this condition. I told the physio I need some form of Excercise to help me with my muscles as they are weak and painful. I have been referred to someone on a one to one to talk to them. Not sure what help that’s going to be. I’m fully compus mentus just in a lot of pain and always exhausted.
I had the same from the pain clinic they asked me what they could do for me I asked about Bowen therapy as my mother was having it in Bulgaria and i had two sessions when out there once myself which did give me some relief but as the health authority don't understand the practice or won't acknowledge it even though its similar acupuncture just without the neadles which they did offer me until covid popped up I got the same kind of attitude. Plus the guy doing the pain clinic seemed to have a problem with Mr Bowen as he said he had trained with him at some point and didn't believe in the treatment. He also told me that the pain comes from the lower spine were the main central nerve meets it seems they all have a different view on the condition
I had a physio appointment wher she practised " hands off" technique and sspent a whole hour discussing my mental health. I am being treated with methotrexate for inflammatory arthritis and on the day could barely turn my head and had pain all round my ribs but no suggestions to help with pain or improving mobility. Have h ad fibro since 2014 and suffer pulled/painful muscles and tendonitis regularlyand feel very much on my own with it.
I was under the impression from my discussion with the physio that talking to someone will help you retrain your brain into understanding why you get the pains and somehow this will help ease the pain ??? Must admit it didn’t make much sense to me how talking to someone can make ones fibro go away .
OMG, I bore my friends by talking about it and I'm still in pain😂
Exactly what's the point of talking to them about a condition and your problems when they don't really except it or understand it you only end up more frustrated
Hi ... That old chestnut! The person who told you that is misinformed.
As others have already said, the answer to that question is a resounding NO! I'm frustrated beyond belief that a so called "medical professional" could claim such a thing in this day and age! I was diagnosed 22 years ago, and at that time, I had a doctor try to tell me it was all in my head. That my depression was causing my physical symptoms! I told him in no uncertain terms that I was depressed *because* of the physical symptoms, I was NOT experiencing physical symptoms *because* of the depression!! It beggars belief that they're still perpetuating this myth!
This nurse should be reported !
You can have depression / anxiety as features of Fibromyalgia however any chronic illness can affect your mental health
Fibromyalgia can sometimes be small fiber neuropathy ,Lyme disease and even long haul COVID resembles fibromyalgia
You need to see a Rheumatoligist who will do a tender point assessment for a diagnosis in combination with history of symptoms etc
If you have 11 of the 18 tender points than a diagnosis can be made
Some of the collection of symptoms may include :
Insomnia or sleeping difficulties
Pain generalized
Irritable bowel
Irritable bladder
Restless legs
Anxiety
Depression
Fatigue
I have had fibromyalgia since 1994
I was an ICU Registered nurse head position and other placements fir a total of 40 years I am 76 years old
Never go back to the person you saw I suggest
There are support groups for fibromyalgia or you can start one in your area .
Research it in the internet through the MAYO CLINIC OR HARVARD UNIVERSITY
I wish you tge best of luck 🙏🙏🙏❤️❤️❤️❤️
I was assessed by rheumatology in 2020 but only had 5 tender points that day I explained how it moves round my body and I normally suffer head to toe . The diagnosis states I have fibromyalgia along with what sounds like quite significant mental health problems which obviously do impact each other exact words of the consultant. I had read the two papers on the NHS site at the time of diagnosis from Canada and Sweden which did state it had strong links with Lyme disease and chemical poisoning which the NHS had left out of their information. I noticed when long covid came about and symptoms sounded similar to fm cfs and certain B deficiencies the website was rearranged very strange . Search 40 unspoken symptoms of fibro I have 35 of them it's bad when they all come at once restless legs restless arms and body . I hope I can cope with it at that age respect to you 👍
no fibro is not a mental health illness whoever depression tend to join in as a side effect of chronic pain and fatigue and fibro fog. ME is the new name to CFS. She is wrong on this. I have been living with fibro and CFS/ME for 30yrs. It tends to invite other chronic conditions and after having this for almost 31yrs I recently had the lightbulb 💡moment what I am feeling is I am tired of living in chronic pain, fatigue and fibro fog for 31yrs. Most people are retiring from their career. I’m ready to retire this old body. I just want to go home. I’m not suicidal just tired of living this way. The nurse practitioner is the one giving to miss leading information.
Hi I agree I'm only 48 and have got to the point where I can't carry on running myself into the ground with the pain and discomfort. People think I've got it easy because I'm on benefits now but is not easy when you've always been a active person. monitoring your life and knowing when to put life on hold to ease your body has been the hardest part. As for making a complaint against the nurse or doctors is a waste of time as I feel like they treat me this way as I have complained in the past. I feel the system has had the best of me and now thrown me on the scrap heap .
No it is not easy plus living on a fixed income isn’t easy either. Waking up on days like today when it is cloudy with rain 🌧️ coming makes for higher pain. I don’t know but I wish that the researchers would do more research into finding a cure. This really does effect a person’s quality of live and leaves you fighting depression and loneliness. It isn’t something easy to live with.
I’ve had to learn to live with M.E & Fibromyalgia over many years, both are hugely debilitating & life altering.
I’m disgusted & disappointed by your nurse practitioner’s ill informed description. How are they even on salary!
I’d be reporting them asap.
As they are doing a disservice to everyone who is genuinely suffering & trying to cope with very real pain.
It’s quite an insult.
I’d also be asking to talk to someone senior in the practice regarding it all & how it’s left you feeling, so you eventually get the help you need.
No one knows anything anymore. I've been diagnosed with both and f.n.d.. really struggling atm. Also recently diagnosed with bipolar disorder, which used to be known as manic depression 😕
Hi sue I have the same problem with my right shoulder as you it started 18 months ago I have to be very careful how I move and get dressed if I aggravate my shoulder or arm I can't move for days or weeks it goes into my neck and head a bit like whiplash. The brain fog and feeling of been detached does feel like bipolar and dementia to be honest
Very lonely place to be, isn't it.
It is.... especially when it moves down your arm to the elbow forearm wrist and then loss of sensation and movement in your hand
The pharma industry and fake business science terms so many illness as a mental health issue. "It's all in your head" turned into a politically correct term called "mental health illness". Sure there are some parts where what we think may not help, that's fine. But the majority of illnesses are somewhat genetic but mostly lifestyle choice either from longterm or even short term. Yes this illness will affect your mental health tremendously, but it is a SYMPTOM not the cause.
I believe a big part of illness and especially chronic illness is caused by the gut. A gut out of wack can cause havoc to the entire system. I am proof of that. My issues were low vitamin D + severe gut issues causing ME/CFS/Fribo symptoms. I found out after years of research and from other people's experience regarding vitamin D. Go in the sun every day if possible. If you work indoors, try to eat lunch somewhere in the sun, of course season permitting. Vitamin D is extremely important:
"At least 1,000 different genes governing virtually every tissue in the body are now thought to be regulated by 1,25-dihydroxyvitamin D3 (1,25[OH]D), the active form of the vitamin, including several involved in calcium metabolism and neuromuscular and immune system functioning."
ehp.niehs.nih.gov/doi/10.12...
AND
ncbi.nlm.nih.gov/pmc/articl...
Also, as for the diet, try a regime that fixes the gut with bland foods at first and start re-introducing things that are harder to digest, but try as much as possible to eat a WHOLE foods plant based diet. Which is less processed and less animal products. The lie of protein isn't totally true. Edamame for example is extremely nutritious and very high in protein, same for other legumes, lentils, seeds etc. Eating plant foods must be done in a whole variety to get all the nutrients.
Here's a good example with studies:
I agree a lot of these problems with vitamin deficiencies does affect the bacteria in the gut which can cause a lot of different problems. With folate deficiency I have been told to eat certain foods green leaf vegetables etc but I have always had a good diet so can't understand why I'm deficient . Yet again we are putting folic acid back into white bread as a supplement research why America done this in the late 50s after all the nuclear testing during the 2nd World War and check what certain chemicals do to the chemical compounds that produce vitamins in our foods (boron especially) maybe that's why they started playing with GM crops. Look at the bread basket of Europe Ukraine and Belarus and what fell on these countries in 1986 and still a certain country is paying farmers off for destroying radioactive crops up until a few years ago and I know for certain that this is true which has left me to believe there is no goodness left in our foods. Ingesting all those things will damage gut bacteria and will inturn create other problems. A friend living in Europe has found two papers confirming that over the last fourty years the vitamins and other minerals in our foods have gradually diminished.
yes, very true with what you stated, I didn’t know about those particular things that happened back then. Wow insane huh!
I’ve also had found that the majority of our soils are depleted of nutrients because we aren’t giving it the right conditions to prosper but instead try to add synthetics or chemicals in the form of nutrients to the soil. Sure it does work but the downfall is that it’s missing all the other components that usually complements each other as well as the natural bacteria in the soil that usually comes from natural decomposition / compost, etc.
Am so pleased you reached out here where folks that have fibro can understand and chat about it👏
and most importantly correct the folk who have been trained to provide factual information and fail.
my personal thoughts are, no mental heath is not a feature of fibro itself.
grieving happens for old life,
while daily learning, what can achieve in new situation find self in,
some pacing, grit and determination is require at times with the pain level,
what want to do or not to do at times.
a smile when cannot believe what is being said is not unusual.
a sense of humour will get you through all the ...... that fibro is.
if folks can believe in the religious maker and father Christmas why cannot they believe in fibro and other invisible illnesses?
Thank you all for your help and support!! Pacing as always been my issue but something I've had to learn to do the last three years and to accept I can't be as active as I would like to be which is the hardest thing for me. Hopefully next year might be a better one all the best to you all
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