In your personal opinion, how have he... - Fibromyalgia Acti...
In your personal opinion, how have health professionals managed your Fibromyalgia post diagnosis & it's ongoing troublesome symptoms?
Diagnosed then left to get on with it. Will supply pain killers, but also anytime need to see GP they almost look at notes and put down to fm. Seems more of a fight to get anything looked at and don’t feel like fighting. Makes me think something else could be wrong and could easily get missed. Is that how others feel?
See my post it nay help ☺
No energy to keep fighting any longer. Have given in and become resigned to a life of chronic fatigue & chronic pain only made better by my own efforts, when I have enough energy and motivation to try.
Yes. I feel once Fibro is diagnosed most GPs won't bother to look for other things.
Yes, exactly how I feel
I had to do all the work after a long struggle I managed to get estrodial gel SANDRENNA this helped me turn a corner as I believe most of my particular symptoms were affected by a terrible perrimenopause. Hope this helps some of you. Also I take anti-inflammatory natural herbs bromelain , turmeric, increase magnesium to 600 mg and take at night.
I have proactively managed my own fibro: making appointments with my GP to discuss my problems and to review my meds when the existing ones are no longer working. My GP responds to my inputs favourably, or at least has to this point. I was diagnosed with fibro 2 GPs ago and a lot of the work had been done by the time I joined my current practice.
I feel it’s been extremely hard post diagnoses as time go on l felt l have more symptom never know if connected to fibromyalgia or not recently diagnosed with restless legs as well and have been told it’s a common condition to have with Fibromyalgia more medication and know real help to how to deal with this condition emotionally....to the world outside you look fine ...great in fact to me it’s the constant struggle of keeping the pain to a minimum and the fatigue is actually unbearable at times ...l often have little hope ...and fear for my long term future
It’s taken over a year for a pain management clinic appointment- no help other than that. No advice - nothing. I have been left to muddle along myself.
Diagnosis was by privately paid for osteopath!! I told my rheumatologist what she'd said & he confirmed it was & started treating that too. When I was admitted to hospital for an unrelated operation, they totally ignored my RA, Fibro & back condition. It really angered me when they asked how my pain levels were on a scale of 1 - 10!! I could have said 20.
They don't seem to understand the deep pain almost to the bones, the debilitating effects or prescribe effective pain management
Like many, I wonder whats really wrong, is it something they're missing. Now I've developed a cramp like sensation in one calf left leg, enough to make me stop and touch area. My head still feels too heavy for my body. My last GP visit I really felt they weren't listening, doing other things, not looking at me.
I get that cramp sensation in my left leg too. Very strange. My head feels heavy too and I find myself propping it up when I am talking to people.
Oh wow this is the first time I’ve ever heard of anyone else say it feels as if your head is too heavy- I’m amazed in a oh my goodness I can’t believe it way.
This was one of the first symptoms I felt and six yrs later it still hasn’t gone away. I wanted to wear a neck brace all the time for some relief but at the time couldn’t stand all the questions that would follow. Maybe I’ll do it now as I’ve become somewhat immune to questions.
Btw-Great way to describe it, will definitely borrow this when I next visit GP. thx
You're welcome. Sometimes the words are hard to find to describe the bone deep wearying pain. My pain is now something I expect to live with. Good luck.
How kind of you to reply, thank you. Generally I am resigned to ‘my lot’, occasionally I remember I really want to keep myself out of a wheelchair.
My younger sister is confined to a chair, therefore I see how this awful ‘non progressive’ illness has affected her over the past fifteen years. This provides the spark I need. Good luck with your own care, my fellow fibro gladiator 💪 May the ☀️ shine on your days to keep a smile in your 💛
I was diagnosed by a good dr and then left to get on with and like the rest of you have said i don't whether what i am suffering from is ra or fibro. I can't remember the last time the rheumy asked about my fibro as they are always more concerned about my bloods than anything else.Well thats what it feels like to me anyway.xxx
Yes me too, diagnosed May 18 2018.
Left to it, told "we don't know enough about the brain"
Being sent to a Rheumatologist.
I'm constantly reading up, investigating, voting for recognition, learning natural remedies.
Success as far as my pain management is concerned, which is such a relief!
Hello there, may I ask what you have had success with?
Medication from GP /specialist or something else?
Essential oils, massage, magnesium spray & baths 👍💜
My doctor just looked at me and said he didn't believe that fibro is a real medical condition and that pain is in my head ..that absolutely floored me ..he has retired and i now see a doctor who is a lot more well informed thank goodness ..x
I was put on increasing doses of fentanyl 150mcg patch I’m now down to 50mcg tramadol 200mcg twice a day, I’m now down to 100mcg twice a day as well as ibuprofen, pregabalin 300 tramadol 50 mg three times a day , amatriptaline, duloxatine plus thyroxine 175mg .... I ended up in hospital due to me being barely awake it’s taken me a couple of years to get down to reasonable doses I feel very angry that it was the doctors were the ones who kept upping the meds and then made me feel it was my fault !!!!! I’m still trying to reduce them but then what will they offer as an alternative I’m lost
I dumped the meds last year. Have more energy but pain just the same without the side effects. Who needs to be more drowsy with fibro ?
Exactly! 👍💜
Oh my goodness Lynn,that’s a huge amount of meds,I hope you are able to reduce successfuly
175 micrograms lynn for you thyroxine ......
Hi Lynn, I too was on fentanyl and and, I decided that l was going to reduce in my own time, I took one drug at a time, fentanyl was a big one, I didn't tell my doctor what l was doing as they knock it off after 2 weeks as if that's enough time to come off such a drug. So one big thing I noticed was that the pain was no better or worse without it, I did the same with amitriptyline. I noticed a big difference reducing pregabalin so kept that at a decent dose, cut duloxetine to 60mg from 120mg. I was so worried what alternative would be offered over the years I've had it all zomorph, sevredol, codeine, oromorph, non work in the long run only short term top up for severe flare ups!
I had pain management for 12 weeks then CBT for 4 months and pills lots of pills now any time I see doctors no matter what the issues just get told it’s your fibromyalgia except in April it wasn’t got rushed into hospital day after seeing a locum with Septic arthritis in my lower spine
You’ve got fibromyalgia, I can give you some tablets for that, hasn’t been mentioned since!
I was given my diagnosis and tild to ween myself off the medication i was on bar 1 lot . One of them being a morphine based drug as i have many different illnesses and still not even been seen to check how coming off them has gone or going. Any other ache , pain or illness is brushed off as FM . Im finding out ways to help myself by research and trial and error .I
My doctor is really no help to me ,he just doesn't seem to have any idea what to do or say .
Prescribed pills that made me gain weight - I found a very low carb diet eliminates most of the pain amazingly, but I get so bored with vlc/keto and its a nightmare trying to cook for 6 and manage any social occasions as i end up being a low carb bore !
You're a hero cooking for 6 ! I chose the cabbage soup diet so i only needed to cook when it ran out. Feel better for tho
Told me,keep taking the tablet's and do lot's of exercise.
Exercise & fibro don't mix but try telling them that. I think we keep the physios in jobs as they wont admit it. Told a few days ago that thigh muscles begin to waste away within 3 days ! Imagine i should be a shadow by now
Just been to hospital to see OT who droned on about exercise and when I said I try to go walking and can’t because my legs go weak she said keep trying you’ll eventually get there. Been trying for the last 3 years and can’t walk any distance. They suggested the gym!
😯😜🙄
I agree with you. 10 year's ago i was fit and worked all my life.I was diagnose with crohns within 6 months the pain in my body was unreal.I was in and out of hospitals having loads of test until 4 years ago was told i had fibro,been on every tablet been seen by loads of doctor's and physios and they just say the same thing.Had to fit so hard to get benefit's,first time i ever been on benefits and was made to feel like dirt. Still i have PIP now but what a fight.
I was diagnosed in 1997 and my rheumatologist after that dismissed my case and was left with my GP who only give me Panadine forte and still on it till now!
My doctor understand my problem s well .
I knew I had symptoms of fibro six years ago went to my GP who told me no such thing just a diagnosis they give when they don't know what's wrong with people he told me to go away stop internet searching I have a back injury caused by nursing and osteoarthritis and I have to live with it . Only diagnosed when my new gp sent me to a rheumatologist two months ago
After being diagnosed in early 80's I have only just been given some medication for my restless legs and arms which have me pacing at night.
My condition was already well managed, largely by me, when a doctor decided to give me a fibromyalgia label. It was at my insistence that I got to see a decent pain specialist some 20 years before being handed the label, and I had learnt self management techniques through my own research. I was obliged to do a pain management course post diagnosis, but already knew all the exercises and techniques, it was a complete waste of time and quite frankly insulting. Just proved to me that they hadn’t actually bothered to listen to me or treat me with any respect as an intelligent capable person. I try to avoid the medical profession at the best of times and usually only go and see them when I know what treatment I am going to be looking for, made easier by the fact that both my sons are doctors and have been known to help me work out an appropriate course of action.
I never did work out why they thought a pain management course would be helpful when I had been looking for advice about reduced energy levels, not pain!
And I remain uncertain whether or not I have a correct diagnosis as I have no tender points, which I understand one is supposed to have with fibromyalgia.
Looking at the pie chart, I'm guessing that about approx 5% have voted 'extremely well'. I wonder where they live and what type of intervention they are describing as 'extremely well?
I now call my GP the 'Chocolate Teapot' because he's about as useful as a teapot made from chocolate would be! I haven't bothered to see him for the past few years and if I'm ever desperate enough to see a doctor at all, I'll see anyone but him. I asked him to read an article about a suggested cause and simple treatment being suggested for FMS which he dismissed saying, 'If I was to try and read everything that anyone suggested, I wouldn't have time for anything!'. I left in tears saying that I wished all doctors could be inflicted with this annoying, painful and bizzarre condition for just one day so that they then may have some tiny bit of empathy with their patients. I added that I wouldn't even suggest inflicting it on my worst enemy for longer than that.
I hate having to rely on a GP as the only channel for treatment. Iam now considering going private as money definetly talks
Hello Vivalaviv,
Hope you don’t mind me popping up to write a reply to your comment. My instinct says just go for it - if you have the drive now to go privately and you can then just do it.
We hardly regret the things in life we did, only things we didn’t.
Don’t wait for a time when you really need it because by then a lot of your ‘fight’ maybe used up in the process of daily survival.
Good luck 👍
doctors remedies unnacceptable, so did not take any of their recommended drugs, and now take herbs and supplements and excersise and go to a hyperbaric chamber and am gradually improving. results encouraging!
I tried an infrared sauna. Stuck in one place for 30 mins is not welcome but did ease my symptons & lost some calories too
Hello Chrisbel, please could I ask what supplements you take. Over the past ten years I have gone from being a healthy out going woman who works full time and enjoys ‘having a go at anything’. To almost a recluse, unemployed and I feel unemployable now - of my own making through pain and embarrassment of myself, I live a very lonely life.
I’m not thinking herbal supplements will be a magic wand but I currently take 9 different types of meditation daily -several x3 per day. I have to start somewhere and having some energy back would be amazing.
Feel free to send a private msg, if it is possible/ allowed.
Thank you 🌻
I was diagnosed about 6/7 yrs ago and over those years i have had no treatment or help for my fibro when i ask about treatment the response from my doctor is you probably know more than me no sorry, i feel i am on a downward spiral the fatigue and pain is unbearable.
Believe it or not, I found out several years after being diagnosed with Fybromyalgia. A hospital consultant (Psychologist) at pain clinic told me quite mater of faculty that I had Fybromyalgia. She couldn’t believe I had never been told.
When I asked my GP at the next time I saw him, when I was diagnosed with Fybromyalgia he didn’t want to discuss and told me not to worry about that!
Following spinal surgery that ‘went wrong’ I now also suffer from what is referred to as ‘FBSS’ (Failed Back Surgery Syndrome) and suffer from severe neurological pain in legs and feet. If it wasn’t for 600mg of Pregabalin a day I don’t know how I would get through the day.
Quite unbelievable. Unfortunately I have been misdiagnosed three times by NHS consultants: Cardiologist, Rheumatologist and Neurologist. Each time I had to get diagnosed privately. Sadly, not much faith in NHS, consequently I now have private health insurance.
I diagnosed it myself after a decade of pain. I got rid of it myself by taking NDT and no more pains, its a symptom of hypothyroid, doctor ignored me. I had to pay for a private endocrinologist to sort it out.
Thx for that info. I will pursue this as my blood tests all come backnegative re thyroid according to GP. But what levels they use is never discussed.
Join the Thyroid group here and ask questions, they are so helpful. You need T4, T3 and TSH blood test. Insist on T3 which is the energy giving part of the thyroid. Get a print out of your blood tests and post them on the thyroid group along with your symptoms. Some good books out there but get on the thyroid forum. I see a lot of the symptoms of low thyroid on fibromyalgia forum, get tested for thyroid and insist you get the T3 test included. Good luck.
was diagnosed 4 yrs ago by neurology after 8 yrs of issues, given lyrica 25mg to start, now on 600 mg, everytime i went to see gp, it was a case of lets up the dose, till you see neurology again, ( only 1 app since) no explanation of either drug/fibro issues or what to expect, so started my own reasearch, i just wish my gp done the same
look up hypothyroidmom and also the hypothyroid section here. I also increased magnesium and it stopped my cramps which were horrendous every night. I take natural dessicated thyroid, I still get joint aches but I now have osteoarthritis but the pains have gone totally.
Hi
My GP referred me to a rheumatologist about 10 months ago, diagnosed about 8 months ago. Once rheumatologist found out it was fibromyalgia she didn't want to know and referred me back to my Dr who wasn't impressed, she was very good. She referred me to pain management who have been useless!!! I have non alcoholic steatohepititis, under active thyroid, IBS, diverticulitis oa in my knees and gastritis to name but a few. I have now had to take ill health retirement which was hard to take but knew my boss was right. Please take care Lynne xxxx
Just rotating the same old medication. No research so no new treatments. The main reason i visit the GP is to satisfy DWP 's insatiable appetite for "evidence"
Latest quote from my gp was “Do you still have Fibromyalgia “????? The pain management clinic is a complete waste of time. The nurse tells me that I have to accept it and pace myself. No further assistance given. The only help I get is from my neurologist which is for migraine (unrelated) ?
Diagnosed not see gp since
My first G.P didnt believe me as I was suffering from depression at the time. His response when I told him I though I had Fibro was 'Its surprising what the mind can make the body feel it has!!!!! I by accident found the expert consultant in my area for Fibro and M.E.I asked for a second opinion, went private, (the Bleep, bleep, G,P even put in the letter that is was all in my mind!!!)for the initial consultation, got my diagnosis and went back to the G.P for some reason!! I challenged him on what he'd said and he denied it! I told him I had Fibro and that I wanted adequate pain releif as I was in agony. He said to me' I'm not giving you Coediene just take Paracetamol...Its not serious you know!!!!! Needless to say that was the last time I saw him! I found a sympathetic G.P in the practise, got referred to the pain clinic as I asked, got lucky again with a lovely anaesthetist who gave me Butrans patches. I took wore them for several years and then switched to oral Morphine.Again I'd asked my G.P to refer me to the pain clinic and I was lucky again with a good consultant. Since then I've self managed.I began to deteriorate rapidly and got a referral to an neurologist and got my M.E diagnosis . Then I deteriorated even further I asked to see my old Fobro consultant who was out of our area but the G.P accepted the referal and made it. I saw him, he tested my Adrenals and said there was nothing they could do, as I knew, and since then I've self managed.I saw another G.P about reducing the Morphine and taking the CBD and she has been very supportive.
I think I've been very lucky but you do have to fight your corner and swap G.P's, ask for second opinions and generally push and push.
I am the same as these other poor people apart from them telling me I have got it I have no help and information what's so ever the only help I have had is from this site and the great people with there knowledge so I must say a big thank you to all that's helped and for your site keep up the great work life would be a lot harder if I did not have this site
I feel as though I've been moved into the 'too hard to cope with' tray.
Apart from being given a booklet and sitting for 3 hours listening to an OT telling us how to deal with it NOTHING
None of the medics seem to understand, or want to acknowledge the condition. I was made to feel like a hypochondriac and I’ve had to turn to private health professionals even though the cost is prohibitive.
Managed my extreme Fibromyalgia pain with help from my Rheumy, massage therapist, and myself for decades. All 3 were extremely important contributors. I have many other problem diagnoses that complicate my health and my pain and I had a tremendous amount of stress in my work and home life for many, many years. Following the death of my dementia-ridden and abusive husband, my stress level dropped tremendously and my pain and my health improved by leaps and bounds. I started dropping medications and diagnoses and feeling like I hadn't in decades. So I must recommend that you try very hard to reduce your stress any way you can to reduce your pain in your present circumstances...so you don't have to wait decades like I did. I think you're worth it, don't you?
I've been diagnosed now... Nothing. Rheumatologist's letter still hasn't arrived after a month and a half, and my GP can't refer me on until it arrives. Not really doing anything else to manage it medically edit controlling my diet and taking supplements. I also take fluoxetine and Tramadol when things get too bad. And I sleep a lot.
I too sleep a lot. And a lot of daytime sleep. But when I am in horrible pain I have to lay down and often fall asleep. I slept alot in my younger years and now realise that it's been chronic fatigue syndrome all along.
APART FROM DIAGNOSES WHICH TOOK YEARS TO GET TO THE POINT . THEN GIVEN PAINKILLERS WHICH DO NOTHING AND THEN OPIATE DRUGS I COULD EASY GET TO LOVE IF I WAS NOT A STRONG MINDED ANTI DRUG PERSON ....
I was told to keep on with an exercise bike. 1k was a good idea ? Did it once & not worth the after effects. Trembling, weakness , increased pain& feeling such fatigue i was physically sick.
Would you tell someone with flu to exercise ? Of course not so why expect fibro suffers to ?
Also been told by physio that well you are in pain any way so what if exercise contributes to it.
Listen to your own body. Its your pain & only a fellow sufferer will understand . The rest of them i just block out
i go out on my electric bike and even that floors me . my thumb and fingers seize up holding the throttle i have absolutely no muscle strength i start of with great expectations forever optimistic then arrive back to crawl upstairs into bed to reverberate feeling like electricity is running through my body and my brain is fatigued like id just done a massive exam ,.. ii is definatly neurological . like the synapses at the neuromuscular junction lack in the ability to send the acetylcholine across for sustained periods .even hanging out the washing my arms ache and fail never mind the rest of my body ... someone said to me your just unfit . so can you have unfit wrists and elbows fingers thumbs and shoulders . dont think so .i try and do stuff like everone else does and they remain fit and can move . me i walk like andy pandys granny and often cant get out the car as its to painful to move after driving even short distance . longdistance sit in the car contemplating the pain i will experience and walk chair shaped to get into the house to go straight to bed.where i lie in the same chair shaped postion as its too painful to uncurl . but hey everyone says my you look so young and well . never judge a book by its cover is my catch phrase in answer to that . the more expercise i do the longer i prolong the excessive pain and weakness .
pgp
I feel the medics have no idea, or are not interested, in trying to control fibromyalgia pain. The pain is unbearable some days the exhaustion of trying to function is awful. I take Lyrica although I’m not sure why as it doing nothing to alleviate the pain. Not only am I trying to cope with fibromyalgia I’m also trying to support my husband who has leukaemia, advanced prostate cancer, fast progressive vascular dementia plus Alzheimer’s. So finding something to get my pain under control would be wonderful. Sorry for rant 😟
Diagnoses and Pregablin
Hi in my experience after diagnosis just prescribed pain killers and amitriptiline for sleep, but nothing else. Sleep depravation is terrible, always tired, only sleep for 10 to 20 mins then woken by pain. My friend gave me some gel containing ibuprofen which helps with pain, other than that you get no help or support.
After 20yr.I still haven't found a Dr who truly understands.what a fight everyday brings.
I had the symptoms for years but it wasn't diagnosed until 2002 but even then I found many GP's ignorant of this disease it's symptoms or effect on the patient. I found bad communication between GP's centres & hospitals one hospital lost all of my X-Rays as well as my MRI results & Isotopic scan results which meant when I changed hospitals having to go through all of those procedures again. Getting medication reviewed has been hard & took years not days or weeks. A recent incident where I had pain like a huge electric shock between the thoracic spine & neck that shot across my shoulders from the neck & down into my biceps altered my vision, increased the volume of my tinnitus, was seen quickly by GP but then ran into a brick wall when it came to seeing a consultant. That was two weeks ago & remains unresolved. I was refused an MRI without any consultation or examination. In my opinion the facilities here in the UK are risible with many hospitals closing pain clinics which results in the overloading of others. The time it takes to get a GP is too slow & the red tape to see a consultant equally too slow. The above dated 30th June 2018.
Best Regards Rob
Consultant amazing. GP's nothing discussed...conversations 'shut down'
My rheumy is only interested in my RA
I find that most things that bother me could be to do with both fibro symptoms and other things that I have I am on 200mg of thyroxine now and on an antidepressant Sertraline. from before Christmas my memory has been really bad it is not about remembering to lock the car or lose the keys I do this most times. it is things like forgetting how to open the car windows or forgetting which way to go in an area where I live and always knew. I was very tired exhausted most days and body aching by tea time most days.
The GP that I saw and that I managed to see for three appointments was really good she said it could be a lot of things but what she did was take blood and did a memory test and got me an appointment to see a consultant about the memory, she even rang me to apologise as she had to put the referral in the second time. The good news is that I am not on a range re memory that requires any further help just now.
I have been on Amatryptaline for fibro the dose was 125mg daily I have managed to reduce this at present I have 100mg 1 day and 75 the next day next week I am going to try to take 75mg daily.
I have also been diagnosed as diabetic recently.
To get back to the poll if you managed to get a regular appointment with the same GP there is much more understanding and help to look at alternative help.
Sorry for having a moan. If you don't want to read move on.
It's really sad that if you have this condition doctors say pace yourself 🤔. In the real world you cant I am the same everyday no energy🔋. I havnt worked since the 13feb 2018. And your boss thinks you will get better. I feel that I am stuck in limbo. And life has stopped 😢.
I am left to get on with it also if I tell my doctor about any pain what so ever they just blame it on my fibro
gave the mrs some medication and that was it
Dont know if this makes any sense, but i was origionally diagnosed with polymyalgia, even though i wasnt that old. I was commenced on prednisilone which eleviated muscle aches. That was 5 years ago.
I still twke low dose steroids and they do help.
Specialists in this field say thwt they shouldnt help, but each time i try tok stop them the pain comes back, so they must be working in my opinion.
Be nice for someone to do a study on this with people only effected by fibromyalgia.
After being diagnosed by consultant writing "fibromyalgia" on a piece of paper and then telling me to go look it up it was downhill from then on. GP told me not to bother her with anything fibro related (how I am supposed to know what is and what isn't!). They obviously do not wish to have anything to do with me or my fibro 
Took me having a meltdown (on the phone because they wouldn't see me) to get the referral to Guys Fibro Clinic. Great service uh. Thank goodness I can just about afford the odd chiropractor and hypnotherapy session. Sorry rant over - but you did ask 
You keep sending me replies but whe n i come to view them i just ge this box ?
To everyone on here... If your GP is treating you exceptionally badly, a quick email to the CCG often does wonders... They will check that the GP is addressing your complaint too. Worked for me a couple of months ago.
If you can see a GP it is a miracle. Pain clinic and pain group monthly meeting excellent. I could not cope without the latter and meeting other patients. Too quick at GP level to prescribe anti depressants, which only makes me like a 'Zombie'. Then there is the 'DWP brigade'!
I am lucky I have a good Gp
My GP said, "We think you have Fibromyalgia, you will just have to live with it."
No backup what so ever. My doctor said to me. You are as you are. Put up with it I'm afraid. You'll never work again. I'm working and struggling through.
It seems to me that once you are diagnosed you are then left to get on with it. I have heard it said, that people who are diagnosed with Fibromyalgia are left with no support, no medication and no life.
Went private...once I had done that my GP was suddenly rather proactive!
Not really any support after over 10 years diagnosed..
Although Dr trying to get pain and the extreme sunburn sensation, the pins and needles, dizziness, cough, brain fog adequately I still feel maybe something else is going on?? Blood tests have shown raised Ferritin, raised ACE and mildly positive ANA nothing seems to be done about it??? I get pitted oedema on my calfs, ankles and feet. It started on just my left side bur know it's both. U&E is normal. I also get really painful pain in elbows, knees, lower back in the bone and also in thigh bones. I'm feeling very low in mood and not been able to do the job I love as a HCA which I have been doing for 18 yrs.
Can't get appointment with GP the surgery seem to want to make me plead for my pain meds.
Pain clinic consultant rude and aggressive in her approach just fed up with being treated like an idiot and a fraud fibro patients always seem to be ignored or ridiculed by those supposed to support them. We know how our bodies feel so why don't they just listen!
after being diagnosed in 10ys ago by rhumatlogist who was very good i have had good care from my gp .
I have been till recently with same GP since diagnosis. That has helped. The Rheumatology dept at hospital turns over registrars so not always easy to get contineum of care. My pharmacy has in the main been good for last 5 years. Eye care great. Teeth care patchy as Fibro affects my jaw it can be tricky.
I was diagnosed when I lived in Wyoming back in 94. I have seen a lot of average doctors, good doctors and bad doctors over the course of WY (seen docs in UT), FL, SD, and SC. When I would find a good doctor either they moved or we moved. Bad doctors only see once or twice and that would be that. The adequate doctors seem to be the ones who stay. I had one doctor who came in first time meeting her she said “I don’t prescribe pain pills”. She was in SC which years later I ran across one of her patients a man that she writes him prescriptions for pain pills.🤷🏼♀️What is up with that? I have had other specialist say treating fibromyalgia is pretty straightforward protocol you give “you give this, this and this.” There is no reason that the PC doc can’t write all the prescriptions you need without sending you to all these specialists. A pain doctor was the one who told me this about that female doctor who said “I don’t prescribe pain pills”. So I saught out another PC doctor. That was several doctors ago and 16yrs ago.
I have RA too. Had three major spinal surgeries, knee surgery, five shoulder surgeries and numererous non surgical procedures. Both RA & Fibromyalgia are poorly managed. I'm 8 and a half stone, an ex ballerina and athlete so very aware of good diet and keeping as fit as possible. Difficult when one can barely walk. After years of seeing the same Rheumatologist, at my last appointment (2months ago) he told me to go away, get fit and get healthy. That, that would be the only way i would see an improvement in my health. To say I was shocked and upset is an understatement. Now I'm scared to seek any help, even from my Gp.
I feel I'm not the only one being treated with such contempt and disregard. My heart goes out to you all.
Sorry to go on.
Best wishes
Xxx
Just been refused pip. Don't know where they get these answers from
If I slipped on the path outside my doctor's surgery, broke my leg in three places with bone sticking out of the skin and bloody everywhere... And I dragged myself into the surgery and said "I'm in pain - help!"... The doctor would say - with a dismissive wave of the hand - "Oh, just fibromyalgia".
My point is that EVERYTHING is 'fibromyalgia' after the doctor has given you that diagnosis. It's called a waste basket diagnosis and that is exactly what they do to you - consign you to the waste basket and ignore any and every other condition that you do have and symptom that pops up.
(Apologies for the capitals - no access to bold or italics!)
On one consultation, my GP said to me, well, you are sore and you are tired, what's new? On another he told me he didn't want to see me. I have no rapport with any GP in that practice. Another filled in my PIP (or ESA can't remember) form saying "she is sore in places"
Yes I’ve been totally left feeling the same. A few weeks ago the doctor gave me steroids to try. I felt a lot more better pain wise and swelling went down. After years of seeing my gp a Neuton for migraines left sided weakness loss of power down the left side. The training Gp at my surger said the steroids could only be prescribed short rearm but would write to a rheumatologist to see if I could have a steroid injection that lasts 3 months. To cut a long story short she said NO she has never met me spoken to me etc. And now been given a patch to try that is a form of morphine instead and this will help with some pain. I told my go how can something that totally made the pain a lot less and I didn’t have the brain fog / migraines etc not be prescribed only to be told maybe if I went private they might let me have it????
Devastated was not the word for it. I even managed to go for a swim on the steroids and that I hadn’t done for over 2 1/2 years. I’m now back being totally as stiff as anything getting that burning / cramp heavy weight feeling along with the brain for and no good sleep.
The steriod I was given was prednisolone it now makes me wonder why they would not give this in tablet for to help us all???
I’ve read other comments on the drug in USA / U.K. where people with M.E and fibromyalgia have also got part of there lives back on this. Has anyone else had / or been given this on the forum.
I’ve also been looked at on my better days and even questioned by 2 members of public as to why I have a disabled badge I now have the fibromyalgia sticker for my car.
The sooner this is recognised by Doctors health professionals members of the public that this is a true illness maybe we can all get the treatment we all deserve. Keep smiling Lv to you all xxx
My first specialist was a woman and she was excellent. I had never heard of Fibro, hypermobility/EDS. Specialist was changed about 8 years ago, he is useless. I have refused to see him again after twice seeing him and he just brushes everything aside and says its me.
Not sure GP always listens plus always seems rushed. Looking into changing Dr Surgery
Newly diagnosed but most medical professionals think it's not a real illness
Sorry did you say managed? 😧. I had to go to my GP with an ambulance full of huge paramedics before he was terrified into referring me to a Rheumatologist. I collapsed at home and was found by the paramedics. One of them had a brain and listened as I told him about my GPs refusal to refer me. The little squirrel did it in under 5 minutes. I had to spell it for him. 6 years down the line and I endure the rollercoaster of pain and chronic fatigue in silence. The Rheumatologist said my health is too complex. Pregabalin for 3 months and I gained 50kg. I’ve given up on receiving any help from the NHS. The next time I hear any doctor or nurse telling me that “Oh but you look so well” I might sit on their head ; all 104kg of me. Hopefully it will shut them up 😂😂
I was diagnosed around 10 years ago, but recently my GP practice has hauled me in to get me to stop taking Tramadol, almost to the point of making me feel like I'm a junky, yes I am dependent on it, as it's the only medication that has worked,. Long story short, they haven't taken it off me, but I've agreed to only have 4 x 50mg a day. Good job I saw this coming & created a small stash. Leaves a very bad taste in your mouth & wary about going to them again.
Once diagnosed I’ve heard nothing from pain management team - the occasional annual or bi-annual ‘check up’ /update, letter of correspondence or questions would be good.
Maybe People with more than one diagnosis slip under the radar as ‘someone else’ will look after that problem.
Seems a department can’t wait to get you discharged - one less statistic on their books!
I was diagnosed in May by a newly qualified GP. All bloods clear! " you're normal" she said! She was very nice, & as helpful as she could be. She explained that 'they' did not know enough about the brain, concerning FM. I was offered a higher dose of antidepressant (taking 10mg for anxiety) I refused that. Told to take pain killers. I'm waiting to see a Rheumatologist. 3 months now.
I returned to the GP recently following a wk of vomiting (bug?) Following much research into Fybromyalgia & pain management, I asked for Gabapentin.
Apparently (from a fellow Fybro warrior) they make you feel drunk! Don't need that! Im a disfunctional zombie most days anyway! I am in pain everyday 😩
Not yet diagnosed with CFS but that's here too! Lost career/job 😢
I'm trying very hard to manage with essential oils, massage, magnesium baths, sleep, family/friend support & pet cuddles 🐈
Praying that Fybromyalgia will be 'found out' & accepted as a disability....'cause its steeling everything from me'! Silently!
I wish all of you the very best 🙏💜
Nothing, I've just been to see an opthalmologist she knew very much more than any of the NHS health professionals
Just left to struggle on - no check up - no verification of current medication - no interest - well down in the too difficult tray. MANAGEMENT? - Non existent!
Very very badly
