So last week I was finally diagnosed with fibromyalgia. I was expecting my doctor to refer me for physiotherapy or pain management of some form, however he simply said I wasn't allowed it on the NHS I would have to pay for it because it doesn't have a cure so there's nothing they can do. He then proceeded to give me a prescription for anti inflammatories and sent me packing.
As I'm sure you can all imagine I was devastated and couldn't believe I wasn't allowed to have any treatment on the NHS, particularly when I have had severe pain in my hands and feet for the last few months.
Has anyone here had a similar experience? Or have you been allowed an NHS referral for any form of pain management?
Many thanks!
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Bumblebee90
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I've had similar response. I was only just told a couple of months back that i had been diagnosed this for a few years now and this was the first I'd even heard of it. All I have been told to do is destress, eat healthy and was given painkillers, anti inflammetarys and amitriptyline. I'm completely in the dark I feel like a hypochondriac and that I'm wasting all my doctors time. Everyone I have tried to get help from say I have to pay for the services. I guess I am expected to just put up with it and get on with it.
I have had physiotherapy on occasion but it only usually lasts for a couple of months and I have to be referred for each thing that hurts. I'd be on forever that way, I have had joint pains since I was 11. I'm not even sure which is the pain from the arthritis I'm supposed to have or the fibromyalgia. I'm so confused which doesnt take a lot at the moment anyway.
I'm so tired I just want to stay in bed all the time and let the world go by which I was never like before. I used to have my home spotless and I was always keeping busy.
sorry for the rant, but reading some of the other peoples posts I realise I'm not the only one to feel like this and that makes me feel somewhat better.
Same here, all I've been offered are painkillers - it's taken me months to find a combination that have given some respite. But no offer of physio or pain management. Although my docs have been okay in that they haven't treated me like a hypochondriac, I still feel as if fibro is the poorer sister of the other illnesses/conditions - i.e. as it's not seen as progressive (although I question this) or life-threatening or causing damage to joints for example, I feel it's not really taken as seriously. Someone may come on here and say otherwise though.
I'm afraid my diagnosis was very much like yours, 2 years later I've changed my GP no appointment available until 15th Jan, hoping he can do something for me.
sorry it doesn't help, only let's you know you're not alone xx
I have a medical exemption certificate because I am on continuous prescription medications. Hence I do not pay for my meds. However, I must mention that I also have type 2 diabetes. You should ask your GP for this.
I was diagnosed with Fibromyalgia just before Christmas 2015 after 2yrs of consultants telling me that they couldn't find anything wrong with me.
My consultant and GP have been very understanding and have referred me for Physio, etc. They have also prescribed me Lyrica which I find takes the edge of the pain.
agree with sorebones,dont get exemption certs for any conditionie,fibro.anyone with a long term illness unless certain ones do not qualify for free prescriptions,i have 4-5 a month and have to buy a pre payment certificate.
I thought I would get one of these as I am on 11 different types of pills and potions a day but I can't get it as my husband earns just over the limit. Typical.
wow I am sorry I have never heard of having to pay before. I have been to pain mananegment Few times over the years. In fact I saw my Doctor just before xmas and asked could I try it again as they may have something new as it had been a few yrs since I last went. He said this was not a problem and is sorting that out for me. I was not asked to pay.
Also last year he made me appointments to go to physio. Again no mention of payment. I do feel so sorry for you. Imo I think both physio and pain management can be a great help for those with Fibro especially if they sensitive to medications. It can be a good alternative. Do you know how much you would have to pay?
Sometimes I wonder if this is just the doctors way of not sending the patients because this is what they believe about fibro.
I had a case with my old doctor when I asked to go to physio he said they no longer did it !! So I phoned my local hospital physio dept and they said of course we are still open and all you need is a referral from your doctor.
I saw a different doctor at the surgery and was seeing a phsyio within the month. I would ring and just ask if what you had been told is correct it wouldnt hurt to double check.
Sorry that you had a negative experience. Health professionals sometimes have no idea the havoc that thier words can have. I get the feeling that gp's have a list of options that they work though. If newly diagnosed you are at the beginning of that. If your prescription doesn't help go back. And see what happens. You never know your options might be reviewed. I did get bounced to the pain clinic but it took a long time. And my experienced nearly finished me off when the consultant snapped " well I don't know what you expect me to do". But that was a blessing because unable to move with gob open. His only option to get me out of there was to offer a pain management course. It's not a cure and had I accessed it earlier in my journey it wouldn't have helped a jot. The course offers ideas to get the best out if the crap hand life has dealt.
This link isn't for fibro but pain. Good luck.
For me finding as much information as possible helped me get my head around the way my life has gone.
I am wondering if a referral to a Pain Clinic comes out of the GP practice budget. It would explain a lot if it does. My experience was worse than useless, unfortunately, but others here have had great benefits. I think there is a residential course in London with one of the major hospitals, I am sure someone here will tell you which one.
I had expected some physio, hydrotherapy, a review of meds and ways to manage the pain better. All I got was counselling, (which I don't think I need), told to lose weight and exercise more. When I asked the best way to control muscle spasms in my back, I was dismissed with "move about more" (Difficult when you can barely put one foot in front of the other)
However other fibromites have been luckier with aromatherapy, relaxation techniques, physio etc. I would ask the Practice Manager at your surgery if they do referrals to the Pain Clinic, and which doctors would do that for you.
Alternately, ring your rheumatologist secretary and find out what is available within the Health Trust in your area.
I too have fibromyalgia diagnosed by some Professor of Rheumatology at our local hospital, whom upon diagnosis gave prescription for amitryptyline and discharged me back to my GP. No follow up care whatsoever. My GP at that time was great and supported me throughout, however he has now retired and I have been allocated to the care of another GP who knew nothing about me at all, she even queried my using a walking stick?? On my request for stronger painkillers (paracetamol....) she refused and told me to double the amitriptyline when needed, again no mention of physio or pain clinics. .......Paracetamol does not touch my fibro pain, it's laughable that she thought it would!! I am awaiting the PIP call this year and am increasingly worried that the lack of GP support and the Rheumy consultant not wanting to know my progress that I am now on a downward spiral to being refused PIP, even though I had to retire through I'll health 5 years ago and on assessment medicals received both ESA (support group) and high rate DLA for both mobility and care! Worried sick now which is of course not helping my increased pain levels........
In general, although there are exceptions, when diagnosed by a Rheumatologist they do tend to prescribe Amitrypyline and then refer you back to your GP without any follow up.
If there are any other GP's at your current practice you do have the right to see whichever doctor you want to.
Good luck when the PIP call comes around. Easy to say but try not to stress too much beforehand.
If you wanted to start getting organised you could get all of your paperwork together from any Consultant you have seen, hospital appointment letters etc.
I really hope that you don't get too anxious,my sons gf was so anxious,her organs began to shut down,she went into hospital, ended up on life support with dialysis as her kidneys shut down too.please try to keep calm as you can,remember the assessors and decision makers don't care,what refusing pip does to a person,so please please don't get anxious.easier said than done.I have to appeal,and I'm petrified.i got standard on both componants,but i couldnt cope with untruths,the decision maker told me what SHE thought I could do.argghhh grrrr.
I am so genuinely sorry to read this and I am totally gobsmacked! I have never heard of this before and probably because it is an 'untruth'. There are conditions that GP surgeries will not fund themselves and therefore you have to pay, and / or certain regional health authorities will not fund, and again, you have to pay.
If you just think about the implication of his statement, if their is no cure then you have to pay? Then this would apply to so many conditions that the health service could halve it budget! Some that come to mind are certain cancers, old age, MS, CFS, Cystic Fibrosis and the list can go on and on!
I would consider seeing a different GP, registering with a different surgery or making a complaint to PALS about this doctor. These sorts of standards are unacceptable in a modern health service. I want to genuinely and sincerely wish you all the best of luck.
Absolutely right Ken. If the reason for NHS support was that there is a cure then that would also include diabetes, for which there is currently no cure. Yet diabetics not only get loads of NHS support they also get free prescriptions. Quite rightly too, but it makes an absolute nonsense of the claim that NHS policy is no cure = you have to pay.
It also suggests a rather selfish twisted attitude of if we can do something about it we will. If we haven't yet found the cure, tough luck. We will just leave you to suffer and rot in pain and misery. In other words the greater your need the less you get. Smacks of either simple financial reasonings or a very strange ethical/moral code, or both.
Either Bumblebee's GP hasn't got a clue what he/she is talking about with regard to fibro or the GP practice is not prepared to fund it. But it is not NHS policy as I have been referred to a pain clinic. I did have to ask but was granted it with no questions or obstacles put in my way. It seems to be yet another post code lottery situation.
Hi, The hospital Rheumatologist in West Midlands recommended that apart from paracetamol (can't take amitriptoline, gabapentin, pregabelin) I should go back to my GP who would get me on a council funded (I pay £2 on the night) hydrotherapy course (done) and local swimming baths, tai chi course (done) found at local community centre and acupuncture (done) For pain relief. It took a few moths to get it all into my weekly routine but I really enjoy doing all three. I was surprised that after a 2 week lay off over Xmas that I didn't feel as much pain as I thought I would and my muscles were more flexible. At the moment this is the best that I can get, so I shall stick with it. Best wishes
Ask to be referred to a Pain Management clinic. It can be a long wait but its worth it as you will be given help with self management and advice about medication etc.
There may be a minimum amount of time that you have had to have pain ie. Chronic pain.
I was asked by my GP if I'd like to try acupuncture and sent to the pain clinic. The doctor there asked why I wanted it!! I explained that I'd been offered it by my GP as she thought it could help to manage the pain. He then snapped at me that it wasn't a cure and wouldn't help! He said he wasn't prepared to offer me acupuncture but instead sent me on two pain management courses. The medical staff there were very sympathetic and lovely but it was hard and uncomfortable to sit through two hours at a time, listening to them tell us why it's important to rest and relax, also how we should do ironing, housework, walking in short bursts, not to push ourselves, if it hurts, stop. And also to ask for help when we feel we need it. Good advice but I think most of us do those things anyway, as it's all we can manage.
My GP apologised when I explained that I was refused acupuncture, she said it was probably because of cut backs.
I now have acupuncture once a month but have to pay for it myself. I still ache and hurt but a lot less than I did before. I have more energy just after a treatment, my mind is clearer, I sleep better and my awful painful headaches have mostly disappeared. I have also been prescribed Tramadol but only take these when I really need them, usually towards the time just before my next top up acupuncture treatment.
It's such a shame that acupuncture isn't offered, instead of all those prescribed pills that don't work.
I have heard that some people were offered 4 treatments of acupuncture but if they wanted more they had to pay for it themselves. I wasn't even offered that, so not sure if it's down to the individual surgery budgets.
I have been told by drs to relax and excerise and destress etc but the bit about asking for help when needed is a joke I have asked for help and there just is no help here where I live unless I pay for it. I have heard other areas get help free but not here.
They did an assessment and reckoned I could pay £154 towards my own care a week. To this day I dont know how they worked that magic number out because I am barely managing. I dont go out because I cant afford to go anywhere. I have enough money to get myself to hospital appointments which usually cost me £20 a visit, and this last year I had extra health issues so i must have spent a small fortune in fares. I was told I wasnt disabled enough for the free transport.
To be honest I am so depressed some days I do try to keep myself cheerful but its hard when the only people I have to help me is my autistic son.
I'm slowly, however finding things out in a round about sort of fashion that I can probably get a bus pass (the only problem with buses is that I cant manage them on my own) as I have DLA full mobility rate medium care rate. I am dreading however when it gets renewed to PIP as I've been told it will be hard for me to get this.
By the way I apologise if I dont make sense my mind gets muddled a lot.
Your message made perfect sense but I can sympathise about the muddled mind. I worked in a school for almost 20 years but had to give up my job because apart from the pain of being on my feet most of the day and feeling bad that I had to ask my work mates for help, I couldn't manage to think straight anymore and lost all my confidence because I kept forgetting what I was doing and what I was talking about. It's awful and so embarrassing.
I'm sorry I should have explained better in my last message that at the pain management courses it was family and friends we were encouraged to ask for help. When I was first diagnosed by the rheumatologist, he sent me home with a leaflet about fibromyalgia and told me to read up on anything I could find about it online. My own GP was a bit shocked at this but I wasn't offered any other help, apart from the offer of acupuncture, which was refused, and her advice to try talk to other sufferers for their advice on any ways they had found to manage their own pain. She also said I should be entitled to claim some sort of disability allowance for travelling to appointments but told me it would unfortunately be a long and difficult process of assessments. I'd already been through two years of assessments, examinations, filling out numerous forms, meetings with the occupational therapist while being signed off work, as the school wouldn't accept my resignation at first. It was only once diagnosed that they accepted it. It stressed me out terribly as I felt at each assessment I was being looked down upon and that no one believed how bad I felt. I couldn't go through that again right now, I haven't the energy.
Like you I wouldn't be able to manage a bus, I couldn't stand at the bus stop long enough for it to arrive. I'm lucky that my husband will drive me to appointments but I have to arrange them around his shifts.
The depression is awful, I sometimes think part of it is down to loneliness and feeling isolated because people don't really understand how we are feeling and we don't have the energy to go and do things that would take our mind off it. I too try to stay cheerful and I'm good at smiling and hiding how I'm really feeling but then people think I'm fine and don't understand when I say I can't manage something! We can't win!
Thankyou for your lovely response, It made me feel so much better. I dont have any family so to speak. My family dont speak to me dont really want anything to do with me, so I dont really have any support from anyone.
I used to work as a playgroup leader for special needs children and had done so for 20 yrs I loved this job tremendously, I also helped out in the secondary schools and Junior schools that my children had gone to and they kept me on.
This really all came to a head when I had a nervous breakdown. I think they (being all the drs I have seen since) blame that for the way I feel. I think that I felt I was like it before just not so bad. As I said I've had joint pains since I was 10 and had on and off depression since i had my first child. Bascially my grandma who i loved dearly died, I left my abusive ex husband and walked out on a job that i loved very much but one person was making my life hell and I basically just shut down. I spoke to a friend (all my friends are online ppl I have never met) and described it as a pc Black screening lol. The reboot has left me sluggish and not all there. I think that description works perfectly for me
All that I have learned about this is from google and its rather confusing for me. There doesnt seem to be any help and support for it where I live and definately nothing I can seem to get for free. I have sat crying to social services, gp's alike saying I'm so stressed and I feel I am going crazy they look at me with blank looks lol like I am crazy. I used to be good at putting a smile on it but the smile is slipping and I feel bad because my son doesnt understand.
So finding this site makes me feel like I am not alone and Im not as crazy as I thought. I've had joint pains since I was 10 so had already tried most different pain therapies on my own. I havent been able to try acupuncture though its always been too expensive. I know what you mean by we cant win its how I feel lol. Anyway speech over lol sry guess I have a lot to get off my chest
I too am pleased I found this website. It was only accidentally by randomly clicking on links from my GP's new website!
It sounds as if we have had a few similarities, from the pain to jobs.
My joint pain started from a young age when I was at primary school too. But doctors sent mum and me away after sending me out of the room and then explaining to my mum in private that he thought I was being naughty and making it up because I didn't like school. But I loved school!
A few years later mum was diagnosed with Hypothyroidism and the doctor suggested I should be tested too. The result was I also was diagnosed with it. That was 31 years ago. The joint pain has always been there but got worse about 10 years ago along with all the other silly symptoms, difficulty walking, standing, exhaustion, brain fog, moving!
I was eventually diagnosed in 2012 with Fibro, having 18 out 18 points, also CFS, Allodynia and Tachycardia. The rheumatologist explained that Fibro often goes hand in hand with hypothyroidism. All I was sent home with was a leaflet.
It's very sad that there's no help offered, or local social groups we can attend to help with the loneliness. It would be a big help to share with others who are suffering the same and who understand.
I understand your frustration and upset at doctors giving blank looks when explaining the depression. They don't seem to know what to say and it makes us feel awkward like we've just said something stupid. Makes me so angry.
What a good site this is to be able to write it all down and get it off our chests! 😊 Great to know people out there do understand!
It seems to be one of those 'postcode lottery' things. A Neurologist recommended I be referred to a pain clinic, but it never happened. If you are on a low income, it could be worth your while to ask your Pharmacist for a HC1 form. It can get you exemption from prescription charges, help for spectacles, dentist and other things if you are under retirement age. I found it very useful.
I was referred by my GP to pain clinic over 2 years ago and I was first told I was not in the right mental place to attend (I had a lot of family issues going on as well as chronic pain) so a year later I asked to be referred again which my GP gladly done and I was assessed by their physio who said I should attend their pain management programme. after 6 months I hadn't heard from the pain clinic so my GP gave me their number and said I should phone them to find out what was happening. They have made all kinds of excuses as to why they haven't seen me. first it was because they couldn't find my notes so I was to phone back then I called again and I was told the reason they wouldn't see me was because I had refused an appointment? then the person dealing with my case was on maternity leave. I eventually got to see another physio who told me what fibro is and that I had to contact them again when I have seen rheumatology. Always passing the buck and no help whatsoever. I feel a letter to PALs coming on! My GP has referred me but has done little else to help chase them up. Losing faith in NHS but cant afford to go private as I can no longer work with the pain I am in. Counterproductive really because if they helped with my pain I would probably still be at work. Gentle hugs Joolz.x
Your nearest large acute NHS Hospital Trust will almost certainly have a Pain Management Service. You can search their website to find the relevant page, print it off and ask your GP to refer you. If he or she refuses, you are entitled to register a formal complaint with the Practice Manager. If you are not satisfied with their response, you can take the complaint to the Clinical Commissioning Group (CCG) that covers your area and is responsible for all the NHS services that are bought for the local population.
I have different reasons for pain,arthritis and spondylosis ,and I went to a pain clinic for 5 years,twice a year on nhs. They advise on which medications will help you,ask how you're going on with a medication they prescribed etc.advise on doing techniques and advise your Dr which meds they prefer you on.They keep an eye on you and also help with wheelchairs and aids to help you.so its worth getting sent to a place near you. Hope you get sorted.xlinda
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sorry for the rant, but reading some of the other peoples posts I realise I'm not the only one to feel like this and that makes me feel somewhat better.
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