Recently my symptoms have increased and mentioned it to my doctors and they sent me for mris and done bloods etc but because nothing has showed up they seem to have lost interest. One doctor started me on pregabalin and now another doctor has told me to come off them as they can cause addiction! I found cbd has helped in the past so I might go back to taking that instead of all these drugs that have nasty side effects! is anyone else having the same experience with doctors? Just not getting anywhere with them at all
Fed up with doctors, getting nowhere ... - Fibromyalgia Acti...
Fed up with doctors, getting nowhere fast!
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Pinklover89
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In my humble experience doctors aren't that interested in long term chronic conditions, especially difficult to treat ones like Fibro. Once they've ruled out its nothing life threatening then their attitude seems to be "you'll just have to learn to live with it".
I suspect some doctors believe Fibro sufferers are malingerers or hypochondriacs deep down.
And if you dont feel any better on the pretty limited selection of drugs they offer then you are more or less left to your own devices. I dont bother with doctors unless its vital.
You have hit the nail on the head! That's exactly what they do! Im done with them now aswell!
Haha I also have underactive tbyroid and if you think Fibro is badly treated then you should read some of the experiences of members on the Thyroid forum. Truly toe curling.
Do not mean to be argumentative but what should they do in the situation that the drugs / options do not seem to work for the patient? The limited selection of drugs is not the GP's fault. They have the toolkit they have and need to work with the patient to see if they can improve things. Often patients will say "I am not trying CBT or antidepressants because this is not in my head." But still be annoyed with doctor for not being given options.
It needs to be a partnership and with the right expectations. Our community is very different from each other and each one of us is a unique jigsaw puzzle to the GP (or so it seems) and things need to be worked through. It needs empathy, time and commitment. Unfortunately the last two are getting harder due to other stresses on the NHS.
"I suspect some doctors believe Fibro sufferers are malingerers or hypochondriacs deep down."
I am a 100% sure this is the case but not all or most doctors. I think equally that some doctors feel pathetic and useless at being unable to help some of us.
There is a lot that people can do to self manage but there is no easy answer either that can be applied to all. Giving up on GPs is just making the options open to you smaller. Persevere and find the partner you can work with.
I've had Fibro for a very long time and in that time I've tried all the therapies the NHS offers, CBT, pain clinic, various drugs, and nothing has worked.
Also in that time I've come across good doctors who wanted to help, indifferent ones and those who as soon as you say you've got Fibro you can hear the mental eye roll. Its very much luck of the draw.
You never get the same GP twice and my wonderful GP who I'd had for 30 years retired after covid and I've never seen her replacement. There is no continuity of care and of course its all virtual contact these days.
I'm sure many good doctors are frustrated that there isnt more they can do, however that is small consolation to sufferers. I find managing my own health has bought far greater benefits, LDN has helped me a lot, although I have to get it privately, which irks me.
I'm probably luckier that nowadays my Fibro is managed and I'm not in crippling pain, so I have no need to rely on the NHS. Others are not so fortunate.
HiyaCan I ask what is LDN you refer to in your message please?
LDN is low dose naltrexone. I take this too and it was a game changer for me but I have to have it prescribed privately and compounded by a chemist privately too.
why the NHS don’t sort this one out beats me 🤷♀️ it could save loads of money for a lot of conditions.
Thank you I'll look it up👍
the reason the NHS have not taken it up is that the clinical trials have not been overwhelming. There are some positive signs from it but not enough to convince researchers or commissioning groups.
One of the good things about it is that it is well tolerated by people so not likely to have many if any side effects beyond more colourful dreams. But there are questions over whether it will work in a lot of people, to what extent, and for how long.
I would personally say the quality of evidence is better than the likes of turmeric and other supplements. But equally if your gene lottery is not of the right make up then you may be unlucky no matter what the evidence.
I am/was a chartered Civil Engineer once responsible for the maintenance of the roads of a whole county.
The roads were in pretty good order, the budget was reasonable (though we did moan about it at the time) and I was very satisfied with the job I was doing.
Now, many years later, I despair at the deterioration of our public highway system...the potholes, the scoured surfaces, the, frankly, dangerous state of our roads.
I do not think I could do the job, today, that I did 20 odd years ago and I'm glad I got out.
I suspect today's GPs feel the same way about their profession.
Pinklover 89. I'm sorry to hear that your going through this but I am also relieved. I am struggling with severe fatigue at the moment. Fatigue and unrefreshing sleep are 2 of my main issues. I independantly started vitamin b12 a week ago, but think its too early to notice a difference. I hope you feel better soon.
Although B12 may help you (and I hope it does), I really hope that you were properly tested for deficiency before you started it. B12 (in fact several B vitamin deficiencies) are really, really hard to rule out and unfortunately taking Bs, especially B12 and folate (B9) can mask the signs in the blood that doctors might notice. It is important to know why you are deficient, if humanly possible, and then take appropriate steps to deal with it. If for example you were either severely deficient or had Pernicious Anaemia as a cause, taking a supplement could be enough to make your blood look fine for superficial testing but will not be enough to maintain never mind repair, nerve damage. Then you will be unlikely to get medical help which you actually need. (I know, as I've spent my life in this B12 limbo, so please don't do what I did, for not knowing better!) Best wishes
Good advice. I definitely agree about getting all the vits checked for deficiency not just the B Vits before running to the nearest Holland and Barratt.
I wouldn't be running there anyway - the supplements have fillers in which make me worse! It is a pity that some vitamins are hard to get tested, and that some basic tests can be so misleading, like B12 (and coeliac), with many missed who do have deficiency or the condition concerned. Even my neurologist was unable to get my B2 tested and my Adult Inherited Metabolic Diseases team were surprised that he had managed a B6 test. Frightening, really. Most are ok with gradual magnesium supplementation without testing, although some doctors are now doing that test a bit more often, from family experience.
I last had my B12 checked in 2019, it was 180 - borderline deficiency.
Although I suppose there must be some people who would be ok with a B12 as low as that, if you are symptomatic (which you are) then it is horribly low. Do you know why? Vegan/animal product-avoiding/absorption issue such as Crohns, Coeliac, abdominal surgery/autoimmunes such as Sjogren's, thyroid, vitiigo, pernicious anaemia (or any in the family)/medications such as Metformin, PPIs (like Omeprazole) Methotrexate, nitrous oxide use...... How much are you taking and what form? Depending on reason for low level, you may not be able to benefit from oral supplements, or not by very much. Best wishes
I am lactose and gluten intolerant, so follow a dairy/gluten free diet. I also suffer from IBS. I take 3000 iu of vitamin D3 because I don't absorb Calcium very well.
My B12 is 1000iu
Sorry about the IBS which may be the reason, or part of it. The diet and D3 sound good and you may find K2 and magnesium useful as well. 1000iu B12 is fine, so probably best to keep taking regularly and see how you feel, assuming that you have no neurological signs or symptoms. If you do, I'd be tempted to go back to your GP and make a point of it. Otherwise you could consider a home homocysteine test to see what level you are at before the B12 has time to change the picture too much. If it is high you know that B12 or folate or possibly B6 are not doing what they should be doing and you'd be able to check that your supplementation resolves that.
What do you mean by neurological. I have Neurofibrematosis, MoyaMoya Syndrome and have a stroke history.
I'm afraid I'm not familiar with either of the first two, but a quick look would make me think that poor methylation and B12 may be partly involved. As to the stroke, I would expect (optimistically) that you have already had your homocysteine checked. If not, I would suggest that it was a very good idea. Cheers
Neurofibromatosis is a genetic condition that causes growths on the ends of nerves.MoyaMoya is a chronic and progressive condition of the arteries in the brain. I have already had one stroke.
Blood tests at my doctors showed that my platelets, among others were abnormal but my doctors are not taking any action.
I am yet to hear from my consultant about my MRI scan. I know there's something there, just don't know a plan yet.
I must admit, I did turn to Google and researched my symptoms.
Low B12 is common in those that also have Fibromyalgia.
This is why I took upon myself to start B12, in the hope that I will feel better.
Can I ask have you been told your B12 is low? Lots of people have a B12 problem. But don't have fibro. I would be careful of self diagnosing you may end up masking other problems if you need to be tested at some point
I would strongly suggest you talk with your GP.
Momo
I last had, that I can remember, my B12 tested back in 2019. It was 180, however, no action was taken. Bloods taken 10 days ago show my platelets, among others are abnormal. My doctors are taking no further action. I guess they're leaving it to my neurologist.
I told a practice nurse, who did my bloods, that I was at a loss as to why I suddenly felt so wiped out. I also told her that I had started a low dose to see if I felt any better.
I don't have any medical qualifications but I have life experience.
May I ask do you have any medical qualifications. Or do you get your knowledge from Google?
Of course you may ask, and no I do not have medical qualifications. I have frequently said so in posts across several forums and that I speak only from my own experience and that of close family and friends (if and when I am fully aware of their medical history). In this thread I have omitted to say so for which I apologise (having a flare, so not functioning at my best). 'Google'? No, I prefer an extensive library and peer reviewed papers, plus recommended doctors. My mother was medically qualified, as were my uncle and great-uncle, and I used to help her, and I have close friends who are or were doctors/nurses and none of them have yet disagreed with me to any substantial degree. We talk a lot. I have been ill for a very long time, have made some considerable progress (for myself), and intend to make more. Best wishes
My experience with the Dr's has been ok. I think that it depends on where you live and your Dr. I have over the past couple of years struggled with pain caused by Fibro and Arthritis, and suffer from anxiety and depression. I have seen various different Dr's that all have different opinions as so pain relief. I have been told that there is no super drug to stop the pain caused by Fibro, but it's a case of having to manage it along with whatever pain relief you are on. Whether that be prescription or herbal.I have been referred to the Pain Management Clinic, which I have had the introductory session, which really helped me understand the pain, and the course will help me to cope with the pain, and to pace myself and live my life regardless of the pain.
I agree with desquinn.
We should be grateful as we do have the NHS in this country, and the Dr's are trying to do the best they can with the amount of people that they see.
No amount of pain killers will take away the pain for good, they work when you first start them, but as your body gets used to them you need more and more, and as the Dr rightly mentioned to you, some are highly addictive.
Someone recently put a link to something called the spoon theory, and that is basically what is taught at the pain clinic. It's a case of managing your pain.
Maybe see whether they have one available where you live.
Hi, I have had fibro for 40+years. Obviously with age I have a lot more things going on also Some other stuff neither fibro or age related. But all pain related.
I just wanted to say I agree with what you said.
I have to say for me personally learning to live with both physical and mental health issues is not about trying to find the magic pills or potions. Been there done that not only wasted so much time but lots of money too.
For me changing my mindset. Not dwelling on the past or the present was the start to exceptance. Not giving up or givining. Just learning to take one day at a time. And listening to my body.
Boring I know lol but you have to start somewhere. And just for the record I am not taking any mediction for fibro etc. Some days are worse than others. But then thats how it was when I was taking the pills so stopped and searched for other routes like you xx
Momo
The problem I have is that on top of a “probable” diagnosis of fibromyalgia, I have one condition which can cause pain (Hypermobility Spectrum Disorder - aka HSD) and last year a raised TSH (Thyroid Stimulating Hormone) was flagged up after a blood test, a possible warning sign for developing hypothyroidism, and hypothyroidism can also cause joint pain etc. The thyroid issue is now being watched (I’m due to get it rechecked next month) as I suspect that at this stage I would be considered borderline “sub clinical” at most.
The consultant who diagnosed “probable fibromyalgia” ran a whole raft of blood tests to rule out anything else that might be causing the sudden increase in pain levels (which had come out of nowhere - I woke up with it one morning) I’d been suffering with for several months. Very unfortunately the one thing he didn’t check at the time was thyroid; that was picked up four months later and hadn’t been an issue the year before when it was also checked. The way doctors are trained these days tends to be non holistic in approach, which means that those of us defined as “complex” very often end up being passed from one speciality to another as different specialists try to work out whether your symptoms are anything to do with their area of speciality. That can really slow down a diagnosis.
So at the moment I still don’t really know why I have so much more pain than I used to. It might be fibromyalgia, but it also might be a symptom of something else developing.
hi Pinklover, I am right there with you. I have tried so many things that doctors prescribed, recommended and things friends have recommended. I even tried the CBD gummies for this new intense pain in my right upper back that started 8months ago. It has spread up my back, neck, shoulders, upper and lower jaw, right side of my head and chest. I discovered that taking 70mg of CBD gummies had an adverse reaction for me. It basically made me feel out of it falling asleep every 30 seconds then something would wake me up only to fall asleep in mid sentence. Had my son call EMS which I only remember bits and pieces. I was “high” but I didn’t like that feeling. I’ve got to go to my eye doctor appointment but I know what you are going through. I’m right there with you.
Pleased to hear, Im not the only one it's so frustrating! You may of taken too high a dose of the CBD it can make you drowsy if you take too high a dose, I don't take more than 40 mg. It doesn't make you high it hasnt got that ingredient in it.
She will be talking about US CBD that will have THC in it.
Sorry but are you going to contradict all my posts!!
I thought I was helping point out why you both had different experiences with Sarah being based in the US and you both talking about different things albeit with the same acronym.
I have learned that we (fibro patients) are not the only ones experiencing the same problem with the medical system. Us (seniors patients) are also getting the run around. My daughter’s mother-in-law body isn’t absorbing nutrients from when she eats but the doctors have not been aggressive as to why. She feels that she is old and won’t live to much longer so why bother.
The CBD gummies this was more than just being sleepy. Long story short the paramedic said “she is just high she will sleep it off”. I never smoked pot nor did any kind of drugs. That wasn’t a good feeling. I don’t like feeling “foggy” or “out of it”. I experienced this fog on 3 different occasions in 78, 81, and then for a month in 89. This was all before I ever heard of fibromyalgia and I was healthy not taking any prescriptions at the time. My daughter who said that 70mg was nothing could take a much higher dose said I was sensitive to the CBD gummies. I have an identical twin sister who has been healthy no fibromyalgia nor CFS/ME has a low tolerance to medications. I learned that I have a high tolerance but there are a few like Robaxin a muscle relaxer that throws me for a loop. That is why when I find a medication that does what it is supposed to do without making me feel drugged but then another doctor comes along prescribe something else that doesn’t work as well. Soma was as good muscle relaxer that worked relaxing the spasms without the duggy feeling. The only thing is I couldn’t take it on a empty. Stomach because it caused a mild druggy feeling. Taking it with food stopped that druggy feeling. I always felt if it wasn’t broke “don’t fix it”. Sorry for the long reply.
One of the big issues I have is when you do manage to get to see a gp (which is a job in itself and very rarely the same person) there isn’t anyone that looks at you as a whole person. I have fibro, arthritis, underactive thyroid, and before Christmas was taken out by a virus or covid and have been really bad since. Currently struggling with extreme fatigue, breathlessness, total lack of sleep due to pain and needed it to go to the loo at least 3 times a night. I should be rattling based on the number of tablets I take which include morphine twice a day.
When I do see a specialist they will only cover their specific area. No one looks at all of the issues as a whole or for that matter all of the various tablets.
Look up the herbalist Barbara O`Neill as she has videos on facebook and youtube about natural ways of helping your health. Also contact a herbalist for advice on what vitamins and minerals, herbs can help you. Twenty first century herbs are good as they sell online. I`ve used them alot. Good quality Pure and Full Spectrum CBD oil will help pain and anxiety. Holland and Barrett use bulk fillers in their own branded products and not as good a quality as say for example Solgar vitamins and minerals. Also avoid Natures Best products as they`re not as good a quality. British Supplements are another online herbalist who sell good quality vitamins and minerals with pure ingredients.
Alot of people around the world are coming to the realisation that doctors don`t know much about general health. Dana White President of Ultimate Fighting Championship said doctors are good for broken bones and surgery but not much else and he and other martial arts fighters know this as they regularly get injured and have many health problems to deal with.
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