In your personal opinion, how would y... - Fibromyalgia Acti...
In your personal opinion, how would you rate your Healthcare provision & the services for those living with Fibro in your local area?
Please select one:
Doctors don't appear to have had enough training re Fibromyalgia.
Hello Tortoise123,
You can get a medical pack about Fibro sent out to your practice, more information on our website. Here's the link should you wish to do so;
fmauk.org/information-packs...
Hope this helps 
Emma
Commmunity Coordinator
Thank you
So so true
I put other as social services said I needed help but the panel refused it due to the fact I applied for pip which has been refused , I have had help via Welsh assembly which is meant for house bound O A P s because they were approached by my daughters friends parents when they saw how I was living and new who to call ,and made an exception to the rules as the director of the projects wife has fibro and knows what I am going through , my Drs have been brilliant even asking writing to social services to ask for help and it was ignored my eldest daughter has now decided to more home for a while so we can be there for each other and stop her younger sister worrying so much.
Hope this helps I have help but from the wrong people for the right reasons.
Shadow
Hi Shadow-walker,
I am surprised you were refused PIP did you appeal the decision? I applied back in March had a Medical in May got the money backdated try again xx
If you read my recent post you'll see what's happened can't write about it again will get upset but my story is their for all to read but I aaplied last year last March got assed in November and was refused , went to court last week and refused again .
Sorry, willtry readyour posts from before, are you in England? who does your PIP assessments, I'm in Scotland & assessment was assessed by NHS nurses not Dr's but I have just sent back a medical assessment form sent to me by ATOS which I had welfare rights fill out, he requested for me to be assessed on paper as just been through an assessment, just waiting on there reply on that, don't let the decision bring you down, make a point of going to Dr's every week, no matter how minor your ailment, have record of Dr's visits & treatments reaply in 6 or so months get a letter of support from your Dr with copy of medical notes but use Welfare rights or Citizens advice in future rather than doing it all yourself these services are free. HUGS to help keep you positive, take care, you can private message me if you wish anytime xx
I live in Wales ,should of been capita but they sent someone from atoms just to see me ,the capita lady was told there was no one in my area to assess someone had her a week after me and they told her about me and she gave them her phone no so I could ring her and she told me to complain which I did but didn't get fresh assessment if it was for friends and neighbours , and my youngest daughter I don't know how I would of managed and a credit card.
Oh I know how that is, my brother, sister & even my ex was helping me out week to week, now I get pip I told them I don't need the regular help but they said they will continue for a while let me build a little savings as there is some repairs to the house much needed xx
I have been cast aside and told that I will be an invalid for the rest of my life. The fact that the numerous drugs that I am taking have no effect on my symptoms does not matter one iota. Out of sight is out of mind!
Sorry to hear that you feel this way. Could you post on the main board about your area and ask if anyone has found a Fibro friendly GP they can recommend maybe?
I known that feeling ,my daughter who I was a stranged from for a no of years has just come back into. My life and has decided to come and stay for a bit and help me , she cooking and cleaning and going to sort my house out my younger daughter did it last year for 4 months ,and now my eldest is going to help me ,she's had a bit of a shock and knows how poorly I have been I am better than 12 months ago , but she has noticed my forgetfulness apparently I am repeating my self a lot and I new I was forgetful with things but I am abit shocked at her reaction as I am a lot better than I was. But like you lots of drugs to be able to semi function ,
I live in south London and I don't really feel my fibromyalgia is supported. This is why I tend not to go doctor.
I voted excellent, but it is all down to my GP & her understanding of how Fibro affects me as the individual, as you all know we have varying degrees & type of suffering, as I choose not to take medication for it except on my extreme days. I also comment on thyroid page, someone suggested to be tested for Hashimoto's disease often misdiagnosed as thyroid problem, so having that test done on Tuesday apparently if Hashimoto's & get appropriate treatment my Fibro pain should leave me, fingers etc crossed xx
Dear Honor1a,
It is good you are having a Hasimotos test as it can be made as a misdiagnosis, therefore it would not be the case Fibro will leave you. It would be you never had Fibro in the first place and actually had Hasimotos instead which has similar symptoms & can be treated.
Please read the post Fibromyalgia & Thyroid as this will further explain, I am sorry but needed to mention as it seems this information needs to be dispelled as research is still continuing into the relationship of Fibro & Thyroid.
It seems some people are being given a misdiagnosis of Fibro initially then find out it is Hasimotos & believe the Fibro has been cured (as misdiagnosed)
Do let us know how the test goes
Best Wishes
Emma
Community Coordinator
It is difficult, if not impossible to get a straight answer from my GP surgery re: diagnoses, although I was told I have Fibro by the Rheumatologist, yet GPs in the surgery do not have the same opinion. Two years ago the Neurologist wanted me referred to a pain clinic; This has not happened,
I do not have a named GP, as mine retired, and as far as I know I have not been reallocated; Therefore I also do not have a care plan nor continuity of care. It takes up to FOUR WEEKS to get an appointment with ANY GP in my surgery, not any particular one. I find this situation so depressing that I haven't seen a doctor since before Christmas. So I am currently without medication of any kind, although I should be taking hypotensives and statins at the very least. Recently they have started sending begging letters asking me to see the HCA for a BP check! I used to be a nurse; I can take my own BP, but they don't trust me to do so!
So, yes, I rate my GP Surgery as AWFUL.
Please do PM me
RE: Pain Clinic referral, this post might be of help
Once pain clinic, cbt, psychology, psychiatry, rheumatology boxes have been ticked there is little else offered other than repeat prescriptions. GP's in my area rely on the pain clinic giving patients information on pain management and they do try but their audience is wide ranging and, in my experience, their pharmacist does not join up with gp hence i ended up being in a lethal cocktail of prescribed drugs. It would be much better for gp practices to combine with alternative therapies and offer accupuncture, reflexology, cbt, food intolerance checks, osteopathy, massage and the likes as care very disjointed and costly if you want to minimise the intake of drugs with awful side effects.
Hello Jax777,
Would this be of interest if available in your area?
nhs.uk/choiceintheNHS/Yourc...
Do you think about having bloods done regularly?, in case you have a deficiency like Vitamin D for instance which may make Fibro symptoms worse, if without treatment for deficiency.
I look forward to your reply
Emma
Community Coordinator
Thanks Enma I will certainly discuss this with my GP
Much appreciated!
Jacqueline
Ps I take large amounts of vit D - much more than prescribed on the advice so me specialist nurse I saw on three occasions. He was v.good but is the only one in Scotland! Says the worse vit D can do to you if excess taken is kidney stones so I'll happily take them and drink lots of water. Bloods are done once a year!
I am one of the majority, little is known about fybromyalgia at the surgery, and I cannot get a referral. I had to go private 20 years ago to get a diagnosis, to be told by my GP that there is no such thing as fybro.
Hello Lesley_havill,
You can get a medical pack about Fibro sent out to your practice, more information on our website. Here's the link should you wish to do so;
fmauk.org/information-packs...
Also this post might help if having trouble with getting a referral;
healthunlocked.com/fibromya...
Hope this helps
Emma
Commmunity Coordinator
I can't say reallyas I haven't long been diagnosed
My Doctor says Fibro all in the mind and after many visits when I kept telling him my body was aching and racked with pain he reluctantly referred me to rheumatologist after blood tests he finally diagnosed Fibro and hyperthyroidism. Offered me a course of steroids and some physio see how it goes. We have a local Fibro Group and the help and kindness from them has been. Invaluable.
Hello Scarluca,
So sorry to hear this, unfortunately this can happen & I have experienced this myself and needed to change surgeries because of this issue.
Did you know can get a medical pack about Fibro sent out to your practice? more information on our website. Here's the link should you wish to do so;
fmauk.org/information-packs...
I would also like to mention it is not usual to be given steroids for Fibro, usually a treatment for Polymyalgia Rheumatica - I was given steroids by one DR in the early days of my Fibro life & Rheumatologist discontinued as considered no benefit to Fibro.
Here's the NHS information about Fibro;
nhs.uk/Conditions/Fibromyal...
Plus this article which you may find interesting;
rheumatology.oxfordjournals...
Hope this helps
Emma
Community Coordinator
Bristol/Bath is excellent. I am getting loads of help and feeling extremely grateful
Hello Magnetta,
I think this might be because the late Professor Davies used facilities there, I seem to remember being offered an input clinic stay there way back when.
Maybe you can recommend Fibro friendly Consultants & GP's to help others in your area.
Great to hear you are getting good healthcare
Emma
Community Coordinator
I've had Fibro my entire life. Was able to manage a very active life, golf, racquetball, jogging, working out, etc, until age 55. Then everything spiraled downhill. The past two years have been gruesome. In fairness to the dozens of doctors I've seen, this is a complicated illness. Many doctors are kind and thoughtful and try their best to help with the pain, but like me, are truly frustrated. I have found, however, that an occasional 10 mg dose of OXY takes the edge off the flares. I have been prescribed 10mg every six hours or 4 per day, but rarely succumb to that, because of the side effects. Don't like taking any meds, but also don't like having to crawl down the driveway in the morning to get the paper.
My heart goes out to every single one of the people suffering with this, let's be generous here, crap.
very little help, have tried to find a group to join, no support group within the NHS and only the pain clinic staff seem to understand the depth of the problems. Getting an appointment with them is like gold dust and in March this year they disbanded our clinic and I am still waiting for an appointment with the new one. I was also told at the last meeting with the Doctor at the pain clinic I will never work again, great, but I get no help financially and I worry what will happen to me if anything happens to my husband as I have no income
Hello Saluki25,
Sorry you are experiencing these issues which must be causing stress and possibly making Fibro symptoms worse.
Have you seen our FAQ section below about how to find advice from FMAUK, here's the link;
healthunlocked.com/fibromya...
Hope this helps
Emma
Community Coordinator
I would love to know where those who said excellent live! It seems to be a bit of a lottery as in, the type of support you get and even if the Dr knows anything about this dreadful ailment! I'm totally frustrated as you get pushed from pillar to post and end up going in circles, which make me even more dizzy than I was! Help!!!!!
Hello Lesjon,
You can get a medical pack about Fibro sent out to your practice, more information on our website. Here's the link should you wish to do so;
fmauk.org/information-packs...
Hope this helps
Emma
Commmunity Coordinator
I am totally unaware of any healthcare services in this area for people with fibro. Since I was given the diagnosis in a pain clinic I have had no further information. I remain unconvinced that my symptoms really fit as my condition has been progressive and I have very little pain these days, although a lot of fatigue and physical impairment. I think the diagnosis was a convenient label and that is all. It has not led to any treatment apart from being made to do a pain management course that taught me nothing that I hadn't learnt 20+ years ago. It didn't help at all with the issue that I had originally gone to the GP about, which was increased fatigue. Now I just stay away and look after myself! It works better.
Hello ClareCrip,
Have you thought about a second opinion? I personally had to have a second opinion myself as Frozen Shoulder was my first diagnosis as they didn't seem to want to listen to my other symptoms - so got referred to another hospital.
Here's a link about second opinions if this helps any;
nhs.uk/chq/Pages/910.aspx?C...
Best Wishes
Emma
Community Coordinator
weather fibromyalgia treatment can give permanent curation without any side effects why dont we take alternative treatment in homeopathy ?
It's a lottery. I've been to rheumatologists recently who say it's not real !!!!!
I've had physios say things like we need to establish if this pain is real!!!!
I've seen lovely doctors etc who sympathise but can only issue painkillers as they don't know what else to do. After more than 30 yrs I've had to reduce my work hours to a handful self employed and have git PIP but ESA people duspute that and say I'm fit to work if I put my mind to it!!! I'm 60 and have worked all my life.
yes and if they didnt change the pension age you would not have to hoop jump its really disgusting how they are treating you take them to a tribubnal . its a minefield but go to welfare rights and get them to help you also go to an advocasy charity as well get they help as well going with you for these things
i
I would actually say non existent. After being discharged from the pain clinic 4 years ago because they couldn't help me I have been offered nothing at all. I have never seen a rheumatologist and self manage through my own research.
My GP is great, it was he who asked my rheumy if he could confirm the fibro diagnosis as the GP had suspected it for some time. I had no knowledge of this so at the rheumatology clinic, (I also have lupus and arthritis) it was a great surprise. Nice to know that I had two independent diagnosis and that both GP and hospital work with each other.
I answered poor however as the pain clinic was worse than useless, focusing only on me losing weight and going for long walks, (I wish!) They refused to consider alternative treatments, hydrotherapy, physio or low impact exercises. I had the feeling they thought it was all in my head as each appointment was like a counselling session. I gave up after the fourth appointment as we were just going round and round over the same things. It was so bad that even though the pain clinic specialist was a highly trained physiotherapist who I felt could have shown me some physical coping exercises, I spent the whole last session sitting, with my coat on. When I asked about overcoming the pain of muscle spasms, he told me to move about more!
I had copies of the same letters the clinic sent to my GP and they were very derogatory and misleading, implying I didn't want to feel well as I enjoyed the attention!
Fortunately the doc just confirmed he thought the clinic was a waste of time and he is still supportive of me.
Apart from painkillers and Pregabalin, which I gave up because of its' side effects, I have had no other treatment.
The poll reflects unfortunately the importance that the NHS gives to people who have fibro. I know in my own practrice of 3 main doctors that only one actually believes that fibro is a proper illness and they haven't much time for anyone who has depresssion or anxiety so if any poor person has all three and is unfortunately to have to go to two our of three of the doctors they might as well stay at home and save their energy.
I am fortunate that I have had the doctor the last 18 months who does believe in it and has tried to help but unfortunately when I move to our bungalow I will have to start all over again. Oh happy daysx.
I was torn between "poor" and "awful" but went for "poor". Basically, I was diagnosed by a rheumatologist using the 18-tender point test (no other tests done to rule out anything else - I've had to ask for those later), given a leaflet about fibro from Arthritis Research (which led me to think it was something to do with arthritis), discharged back to my GP and left to get on with it on my own. It was only through the FMA forum that I found out there was such a thing as a pain clinic. I asked my GP to refer me to one (she didn't know about them either), and they put me on meds, gave me physio and hydrotherapy, and at least tried to do *something*. But without the FMA forum I'd have been left completely to my own devices - the NHS simply weren't interested.
I suppose I'm very lucky to have such an understanding GP
Long waiting list for pain clinic & also Rheumi. But once seen by pain clinic, felt they really did get Fibro. Still waiting for physio with them, but not long now thankfully.
Was referred to pain clinic and was told fibromyalgia is a sleep problem and there was nothing they could give me that would work.Waited months for the appointment and have never been so dissappointed in my whole life.The consultant couldnt get me out of the door fast enough.All he did was refer me to occ therapist to help me cope with pain.gutted have now had to take ill health retirement as cannot work.Most days are filled with pain and bone weary fatigue so have to sleep for anything from 1-4 hrs each afternoon,doesnt refresh me though but if I don't have it I want to go to bed at 6.Gp is pretty good ,sorted my tablets so I'm not such a zombie.Have a good relationship with him but there is nothing else he can give me so I trudge on each day and just keep going.Warm weather has helped a bit but it's now gone cold again so up goes my pain and always feeling so so cold,sorry about moaning but when you constantly feel unwell it's difficult to see anything positive.Hope other people have a better experience as mine was absolutely rubbish keep smiling xxxx
I voted ''Acceptable'' as I believe that is all it is and nothing more despite having some good treatment on the NHS it does even itself out over time.
Doctors don't know enough I don't think but my doctor is pretty good we have got a lot of fibro sufferers in my arear too xx
i have a good gp that understands fibro but i do not know of any support groups
I am very disappointed with the Healthcare provision in the city where I live and this is in Birmingham which is the second biggest city in the Uk. I moved to Birmingham 4 years ago although I lived in Birmingham previously 15 years ago when I had my daughter. I have suffered with SLE Lupus since I had been a young child however I had been diagnosed in 1998 while I was studying at the Salford University on a BA Social Policy Degree Course. It was not until I moved to Birmingham that my previous Rheumatologist who was not very nice and professional diagnosed me with having Fibromyalgia in 2012 that is the only medical condition that she diagnosed correctly. I have been to one Fibromyalgia Pain Group in Birmingham but I did not see how this had been helpful because I had the information already and if I did not understand any medical words I would goggle it on the internet. Most of the time people in the group would not turn up and all we did is sit and have tea and coffee and although we had to pay £3.00 I did not get anything from attending the group and there had been no medical professionals who attended the group to give talks about the condition when they had supposed to attend it was a waste of time so now I do not attend any groups. I am more aware and have a great deal of knowledge about my SLE Lupus then my Fibromyalgia and I have my Rheumatologist that supports SLE patients where I have no medical Professional to support me with my Fibromyalgia condition. 
My Gp is very helpful and does listen but the health service in general has little understanding or provision for those suffering Fibroyalgia.
Not allowed suggested drugs as need to be prescribed by consultant not GP and still waiting to see a consultant who knows anything about the condition (Seen two who just told me to continue on Gabapentin and amitriptyline which were causing bed side effects) - one said he was a stroke specialist and he didn't know anything about my condition; the other was a rheumatologist who diagnosed fibro but didn't know much about treatments,
I like to see the same doctor if I can as he listens and don't rush you to much.
But it's very hard to get a appoint ment x Cherokee x
I can only answer from my own experience, I cannot fault the care I receive. Lou
I have Fibromyalgia and there is only one hospital that deals, with this condition, and I think there should be more, but they say the patients who have this condition do not get a referral from their doctors, and they need about 10 people to start a Fibromyalgia Clinic. So please people of my area go too your doctors and get your referral so we can open another Clinic. Thank you.
In my experience, most GPs don't believe it exists and if they do they'd rather ignore it. Its just to complex to deal with.
no help at all from anyone
I live in quite exquisite area, even though the health care professionals don't know enough knowledge about FM, they really listen to what I experiencing, they also thanked me when I handed out some information or clinical trial about the FM..as you can imagine they have to see too many patients, they have not got time to search..so given some information by the patient who are suffering for FM I think it help them to understand how we feel. It showed that we really concern and would like to participate to get our self better.
Gp tries but pain management are always making me wait so long for next apt, not seen them since December after a Joint facet Injections in my back. They failed to work and when I had a telephone appt in March I told them this, she said I would be sent for and will be put forward for lidocaine infusions. Its almost September and still nothing. My GP has wrote and asked for an appt, but still nothing, so I have to carry on with Morphine and duloxetine for now?
It's rubbish here (North Yorkshire). My GP has sort of said I have fibro (along with 'something else'), shoved pain meds my way and that was it. All the information I have received has been on this forum.
Think a. lot off practices don't have the information needed to spread the word about our condition, three years I complained about one ailment to another , was working at the time,whic added to the torment/pain, .
It was a locom doctor who diagnosed me in January this year to my relief that one had listened to me, I have not had the condition confirmed by Rheumatologist yet, waiting on the appointment.
Good luck to everyone who doesn't know. GPs not having the no how on this, going from one doc to another, going round the twist because no one can see your pain, I was so grateful that I got he answer. Hugs to all x
i voted awful because thats what i think of my doctors i changed doctors because i had to wait a fortnight to get an appointment my new doctors you dont have to wait you can get in the same day but they have absolutely no idea about fibro really feel like i am just thrown to the wayside its really awful i could cry.
After seeing a lot of different GP's I finally found a young doctor who is excellent. I think because he's younger he is more aware of the problems.
Also he has not complained yet about the amount of times I go to see him.
I am also lucky because the Bath Mineral Hospital is down the road from me, and they take people from all around the country for rheumatological complaints.
When I said go to GP even no matter how minor, I was not meaning a sniffle! In Fibro people all to often dismiss it's just another fibro symptom I was encouraging any new symptoms not to be ignored & have things documented, I attend the GP almost weekly, but don't take prescriptions everytime, it just keeps my records upto date & the doctor aware of how I'm coping which is with great difficulty. We as a country as you say are "financially screwed" is not down to genuine sick/ill/disabled patients attending there GP but people who are just heart lazy & have no intention of working, claiming benefits right left & centre is what has in part ruined out country
Far to little knowledge of Fibro amongst the medical community. Even the practice nurses hadn't heard of it
i would say awful to poor but sadly that is the average around here.
Doctors need much more training and need to know about the meds. that are best for fibro.patients and also needs to be MANY MORE places near to your home town to do the exercises and get help as my nearest was miles and miles away and i dont drive and couldnt get there so have had no help.
I suffer severe from fibro. , caused by car crash over 7 years ago, the accident also caused psoriases, hiatus herna, PTSD, back problems(curve is less than it was and I suffer severe pain throughout my spine and surrounding muscle and tissues, this makes walking, bending, and pretty much all activity impossable, on numerous occasions when I have been forced to bend or crouch down I have found myself sat on the floor unable to get back up again usually 10mins or so until I am able to wiggle and drag myself up using a chair or something with handles I can cling onto and pull myself up, this usually leaves me so weak and shaky that I need to lie down for long time to ease exuastion and stress and anxiety, the feeling of shame for being so weak and pathetic I HATE BEING THIS WAY). Also the discs have dryed up in my neck causing constant pain and unbearable headaches I can hear the bones/vertabrae grinding as i move my neck,head and often shoulders or upper back, i find this deeply unsettling as with each grinding sound i hear i can imagine the damage being done. My shoulders have been left misaligned and TMD i suffer from has been getting progressivly worse to the point were i findit unbearable to cope with, the muscle spasms/aching pius joint pain and bone ache/pain are ridiculous, allydenia makes wearing cloths almost unbearable and something i only do when absolutly neccarsary, i have been unable to were a bra since the crash which have left my rather lg. chest arrear dropped down which i feel makes my shoulder pain and neck even more painful due i believe to the weight of my drooping breasts pulling against the joint and muscle of my upper body this i believe also affects my mid. and upperback causing both pain and severe muscle spasms this leaves me needing to take both pain meds (Tramadol and paracetamol) which are woefully lacking but all i’m given and diazepam to try and relax the muscle and hopfully release any trapped nerves. There many other aches and pains but can not be bothered going any further except to mention the persistant fibro.fog and constant debiliting headaches and of corse the never ending exaustion due to poor sleep and insomnia. I also suffer from hypothyroism, polycystic ovaries, depression, stress, and anxiety, hiatus hernia, psoriasis,and an enlarged liver showing excessivly high LFT results (at least I think it’s LFTs) I also believe my adrenals are over working to compensate for no energydd due to various symptoms, hypoglycemia as i find myself feeling sick, evenless energy and excessive tremors/shakiness paticularly on waking or when i havn't eaten (to tired to make something to eat, as it is literally to much effort when feeling so bad. I also suffered rheumtoid arthritis wheni was 4 years old(this wa fortunatly cured ast that i was fortunate to have an excellent consultant, if only one could recieve such care nowadays). My personal experience of the medical profession over the last 20 years is none stop incompotence and complete apathy and disinterst, there is no real understanding or seemingly knowledge about any of my health problems or how one should go about treating them. I find myself feeling abanded and unheared and have reached a point were i no longet see the point in bothering with the current lack of help or interest in doing anything for me, in fact on the rare occasions i do go to see a GP i usualy find myself feeling more like an inconvienience than a patient in need of help. I would love to know how one goes about finding a doctor who may have an amount of genuine compassion and an understanding of this life detroying illness.... Anybody in the birkenhead area of merseyside who is fortunte enough to have a GP who is willing to help and has some understanding of the evil that is fibromyalgia please post their detials on this page, and if your GP is able to see you as you need them as opposed the current "I'm sorry were fully booked for the next 2 weeks, and the system won't let us book anything later than that, so if you give us a call next week we might be able to find a space for for you (different doctor eveytime so unable to build a rappor and potentialy find a doc. that does maybe have an interest in helping a patient with this ilness and attempt to get them some sort of help/treatment plan with hope of improving ones quality of life, maybe even ensuring you can be seen when help is infact needed rather than when its to late and you've already given up.!!!)
