Went to doctor with theory that I had picked up that fibro mimics cervical stenosis. I had seen articles from medical trials that suggest this, so put it forward to her.
She tested my upper body strength which was ok, but wasn't interested when I asked her about my latest symptom - dropping things. She was convinced that there "wasn't anything neurological involved" (isn't fibro supposed to be partly neurological??).
So I then asked her about the weakness I have had down one side of my body from waist down after trapping a nerve around 3 years ago. I wan'ted to know if there was anything I could do to strengthen my walk, as I now have a more developed leg on the other side and find hills a struggle, dispite regular chiropracty and deep tissue massage. She said "I'm not worried about it" (????). Personally I don't want to hear that as it is ME who is worried about it. I left feeling that she didn't care two hoots and still must think that Fibro is purly rheumatoid.
Do I need a second opinion, or am I really off the mark here? Below are links to some of the articles I read about Fibro and stenosis link.
I don't think most GP's keep up to date with Fibro, often we know more than them sadly. I'm not really sure what the answer is to it all - how can we force doctors to get themselves educated?
It is a case of finding a doctor who believes in fibromyalgia. There are many that do not. This is not a case of them not knowing or having the knowledge of it - just their own choice of not accepting it. Which means many people suffer and are just put down as being depressed. Only thing that can be done is to insist on the doctor making an appointment with a fibromyalgia consultant. Easy said just make sure you are insistent and do not allow them to control your life. Yep I have been through the lot.
I created a post on HM Government Petitions, GP increase their lack of knowledge regarding Fibromyalgia. This currently has 294 signatures. I did this out of utter frustration with the GPs I see. It's a start.
Regards
Karen xx
I think it's more that some GP's don't understand and haven't the knowledge of Fibromyalgia as opposed to them not caring. Of course it comes across to us as not caring, but really it's ignorance I suppose.
That is why increasing Fibroymalgia Awareness is so important to make GP's and people in general aware as to exactly what having Fibro entails. It is slowly happening, but needs to be a lot faster really to help people with symptoms before and after diagnosis.
I personally think GP's should have updates to their training and expertise - just because they studied and qualified ten or twenty+ years ago doesn't mean they are suitably equipped with knowledge of every illness and condition. Therein lies the problem I think. Updates and more studying should be essential, that is the only way in my personal opinion. After all it affects peoples' lives and what could be more important.
Doctors training post qualification is often courses in posh hotels held by the pharmacetical companies.
When you think that teachers have an obligatory 5 days each year as well as a budget which varies from school to school but usually means at least one days off-the-job training then you can't help but wonder why doctors do not have some obligatory minimum training requirement in order to continue to be licensed to practice. If they did I'd put Fibromyalgia at the top of the list.
I do think a big problem with Fibromyalgia is that there are no NICE guidelines. How do we petition NICE to put together guidelines for Fibromyalgia?
The nice guidelines are that it all comes under the ME banner....therefore we are probebly exaggurating (that spelling doesn't look right) and need to be treating with caution. They play down our symptoms and think we'd get better if we learned to ignore our pain and other symptoms and just acted normally. That's why they offer CBT , GET and anti depressant meds ! That's what nice guidelines offer. If you're going to campaign, it would be more useful to push Dr Myhills causes for better research....so that nice have evidence to base their treatment on. Nice is purely evidence based....that means no treatment till they have black and white evidence that it works and works for everyone. Doctors hands are tied. Their thinking is.....oh no I can't do anything....how can I make this sound supportive while telling them to buck up and get on with it...... Most doctors either know there's more to this and can TALK about mitochondria and limbic brain disorder....or don't care because they have solid diagnosis and treatment patients coming 5 minutes after us. .... That doesn't change anything. They're not allowed to act or treat on theory !
Sorry... Steps off soap box !...
I'm a firm supporter of the NHS and my background is in nursing....but I don't waste my energy on it any more. Hitting my head on that brick wall really hurts....
There was an application made to NICE by another organisation some years ago that was turned down - which I was thankful about. NICE isn't just about what is best practice clinically but what offers best value for money for the NHS. The NICE Guidance on CFS/ME, though it said that individual symptoms should be treated appropriately, really pushed the message that medications should not be prescribed for CFS/ME which was a negative factor. There remains a concern that until we have better evidence, the more expensive treatments for Fibro would be ruled out by a NICE Guidance and although some of these may only work for a small fraction of the Fibro population, they can be very important for those people.
It's an ongoing ambition of mine for FibroAction to produce a formal care pathway for Fibro and we would like to get this done in future now that we are expanding the FibroAction team.
first of all if you feel your dr doesn't care then you have the wrong Dr
gps are general HOWEVER when you have a good GP and built up a rapport with them they SHOULD be making the effort to further their knowledge on the chronic conditions of their patients.
second you have the right to request a consult with a specialist
investigate the reputation of specialist in your area, you CAN request a referral to a specific Dr.
third... yes fibro has neuro componants and regular neuro exams are important mine are every 2-3 years, as scary as this may sound medical research have shown that patients with fibro have increased potentiallity for other neuro conditionds a good GP will alwayhs wish to keep an eye on your neuro symptoms.
I am very lucky in the past 6 years my GP has made the effort to go from useless with fibro to in General Practice terms expert (by no means specialist) but he is the BEST in my area now.
I believe it is VITAL for any person with a chronic condition to find a GP they trust, that they ONLY accept appointments with that GP, unless it is for an ACUTE EMERGENCY, there are 9 GPs at the practice I go to and I wouldn't wish the other 8 on my worst enemy.
Now aside from the practical advise I want you to know I am thinking of you and I am sorry that you feel this way about your GP, you must find someone that you trust. medical empathy is one thing but as your primary point of Care your GP has a duty to CARE.
I am going to try a different GP Sapph. The fact that she hadn't even cottoned onto the neurology bit scares me! I am just going for trigger point therapy today. The physio who does this says he is also unaware of the spinal stenosis link with fibro, so I am taking him my web page printouts withthe comparison table on it. The GP wouldn't even look at it when I offered to show her.
I have a friend with MS who has suggested I go to his practice nearby, as they are good with him there, so after trying a couple more at this practice, I may migrate!
Hmmm tricky my new gp ... Old one retired says he has lots of patients with fibro then tries to cut my meds....got to see him today actually made it a month without going ... Am actually dreading it... Am taking a list with me so I won't forget what to say ..... If I don't forget the list.....
Well doctors when i were younger seemed to care, but now [content removed by Admin]they don't seem to bothered, i have had Fibromyalgia for years now, and i have never had any treatment, i didn't know until recently that it could be treated, i also have Arthritis, Asthma, Chronic Brochitus and Tinitus, and i only get treatment for Asthma.
Im with u there! as well as fibro ive got copd back and knee problems on top of that ive got depression and anxiety,which has got worse.also because i cant get about ,ive put on tons of weight and still i feel as if im getting the brush off by my doctor..i asked her if she would support my dla claim,and yet again i got the brush off..they are happy enough to dish out the pain killers and anti depressants though.
Thats because they get an incentive to dish out the meds. A while back I was on statins to lower cholesterol and decided to take enzyme Q10 to lessen the side effects (which as we know mimic or exasperate fibro). My GP couldn't understand why I took those as they had no clinical backing.... Turns out then that one of the major drug companies were actually debating wether they put Q10 into their statins! I just have to wait now till the GPs in our practice cotton on
Ive seen a few doctors and as the first 2 said it could be fibro,the doctors at my surgery have just gone along with it..Ive never been officially told that ive got fibro,but that might be because ive got other medical problems. Ive never had fibro explained to me,what i do know,ive found out myself..ive had physio,an mri scan,app at the muscio skeletal clinic,pain clinic the osteopath and nothing has been confirmed..I knew years ago that something was wrong with me besides a bad back and knee..Ive got worse over the last 5 years and still my doctor brushes off the fibro.I dread going to the doctors as they make you feel as if theres nothing really that bad wrong with you..xx
we get Asian drs at our surgery from time to time and theyve been brilliant. their knowledge is way above our English ones. one English one i went to for about 4 years after a suspected heart attack was as described above. several times i took in articles to do with what HE had diagnosed me with. new meds available or other stuff that had been found out. he kept the print out but im sure he never read it and thought i was a hypochondriac. after being told i had slightly enlarged heart caused by my "high blood pressure" (which ive never had in my life) i changed to one of the others.
So sorry to hear that u have Dr who is not supportive. My gp is wonderful, so supportive and always looking into treatments that could help. I guess I am one of the lucky ones! ! I also want to say Thankyou for the replies and kind words I received in response to my post " losing the will" they really helped Thankyou so so much x x
My previous doctors were fantastic, but we moved area then found another doctor who retired, the two left in the practice now are about as useful as a chocolate teapot; they are too scared to diagnose anything but just refer to specialists then have to be nagged to follow up on the specialist's findings.
I ought to go to another practice but to be honest they all seem as ineffective as each other in this area; my daughter has a good GP but she is only part time and the practice has become so popular that demand has outsripped supply and if you can get an appointment it tends to be with a locum you've never seen before and will never see again, no use at all for someone with anything but the most straightforward of medical histories ... and that isn't me sadly.
The best GP's Ive seen have been Geordie (very nearly English lol), Malaysian and New Zealander; it is the person not the origin, gender or ethnicity that matters.
I think the biggest problems with doctors is that they don't actually listen any more and rely on tests, most of which are normal with fibromyalgia. This seems to be what people are saying throughout this thread, and indeed throughout meetings of people with FM. Relating to the cervical spine issues at the beginning of the thread, see research by Dr. Andrew Holman in Seattle, which has demonstrated that 71% of persons with FM have positional cervical cord compression (PC3) This causes dysautonomia, or disfunction of the autonomic nervous system which causes fibromyalgia symptoms. positionalcordcompression.com They are actually in effect curing people of FM symptoms in Seattle by either fusing some of the cervical spine, or manipulating the spine, or by what Dr. Holman calls Alexander Technique plus
Glad that I am not the only one who has read about this. Shame the doctors don't seem to have....or do they know something we don't ......he, he (ironic laugh). I will look at this link now
Actually, I saw this link at first and it is what put me onto the theory, as Dr Holman came over to the UK recently to do a talk on the subject but it was really down in the South so I couldn't get to it. The USA are always steps ahead, and some of Dr Holmans results I think are based on studies that go back as far as 1999.
I had been diagnosed for ten years before I got the GP I have now. He printed off a fibro info sheet for me about 5 pages worth. I have long since lost it but I was always grateful for that. I get confused on all the different issues though. Now that could be with old age lol xxxxx
I went to the doctor yesterday because I needed stronger pain killers. He sent me for an x-ray as he thinks it could be arthritis and told me to lose weight, which while I admit I am overweight, other doctors have sympathised with as it is difficult to go very far when one side of your body is yelling out in agony. He did put me on stronger painkillers though. Thankfully.
my doc has just put me on new antidepressants saying " u shouldnt put on weight with these". i wasnt impressed! why give people medication that will make them put on weight in the first place..this was the doctor who told me i was on too many sedatives( i thought they were pain killers,which i obviously need) and took me off gabapentin..on the positive side my appointment for the pain clinic has come through. I was wondering if its appropriate to ask whoever im seeing to write a report to support my dla appeal. What do you readers think? Hopefully i can get some straight answers now,but im not going to rely on it!
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