Been diagnosed with fybro but I have had all over pain that is only getting worse it has waves of heavy and light pain from my head to my toes I have been diagnosed with tinnitus in both ears.And I am having treatment for jaw and facial pain.l also get heavy headaches.I have had meds for panic attacks . My doctor recommended me for rheumatologist and they offered me physio again they would not see me.I feel like no one believes me.Has anyone any ideas please PS I have had all the blood tests all OK also I do have a lot of tender points in my hands elbows and knees and feet not all at the same time and pin and needles in hands. Any help much appreciated. PS i am a man 36 years old have symptoms for over 5 years.I am lucky still too be working I drive a lorry for a living.I am taking gabrapentin and naproxen .nortriptyline.
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josephmc
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It is very hard to get anyone to listen to you, but if you were referred the physio should have seen you surely?? Anyway, I've been through the same as you, and the one difference that worked for me was seeing an osteopath. Admittedly it is initially quite expensive whilst they get you back to 'normal' but after that the maintenance is every three weeks for me, which I can increase if I need to. It is worth going by word of mouth as some osteo's aren't that great.
I had all the tests and nothing seemed to be working to include medicines. However, the osteo examined me before starting treatment and found that I took most of my weight on the left hand side of my body which was why I was experiencing numbness, amongst other things, on that side which was most prevalent. He knew about FM and understood that, he needed to go slowly. I have benefitted so much from it and still maintain a 'normal' life and studying to be a nurse.
Continue to badger your GPs, make a nuisance of yourself and they may start referring you properly and help you to get a diagnosis.
Hi Jess you say that weight is going all on one side. After i was dianosed with Fibro i was having lots of pain in my hip. I found it was bursitis however they also referer me to an orthotics for assessment and it turned out that my right leg was shorter than my left and that is now causing the pain as well as fibro. They made special insoles for my shoes - i had no idea about this i am 54 years old and only just found out.
Hi Joseph - just a query. have you been referred to a reumatologist as i was and then to a pain clinic and the rheumatologist diagnosed fibro and the pain clinic also confirmed it.
I have been diagnosed approx a 6 weeks ago, after many years of severe migraines, restless legs insomnia and pain in most of my major joints what was put down to arthritis, this then spread to most of my muscles, then I started with pins/ needles in my legs that feel like (the only way I can describe it) I have got my legs submerged in a bucket of coke and the fizzyness of the soda is prickling up to my knees.
It was my daughter in law who actually said it sounded more like fibro (she is a GP) so ask my doctor. who is also her doc. She agreed with what my daughter in law had told me. and "claimed" she starting to go down that route herself. I have now been referred to a pain clinic no appointment yet, But have not been referred to a ruematologists. Does this matter, should I ask to see one?
Looking at your location , don't worry about being referred to a Rheumatologist. You will be sent to Bolton One, (this is where I go) and will be assessed there. You will then probably be passed on to Jan Howarth who is excellent and will arrange lots of support for you.
If you need any advice as to what to expect, feel free to PM me
I’m currently going down this route and my gp said it’s rheumatology are the ones who will diagnose so I would keep on your gp for a referral
I didnt see a rheumatologist until five years ago when the arthritis set in but I was diagnosed 23 years ago when I was 25 so I expect things were done differently that long ago... Fortunately I have always managed to find fibro friendly gps...
This is a problem - I self diagnosed initially and I knew for certain what my diagnosis was, but the medical profession do not listen and they hate it when people do self-diagnose and they certainly don't take it into consideration. Your GP should be able to diagnose you, but if not you should be able to get diagnosed by a rheumatologist. Because you are male, this might be one reason why they are not taking it seriously. Have you got a good supporter or a other half that can go to the doctors with you, so that you can explain your story and he or she can back you up? I definitely find my GP listens more when I have my husband with me. Somehow having an official diagnosis is helpful because otherwise you are left in the situation where people think you are a malingerer or a hypochondriac, and this then puts you under more stress when you are with anyone from the medical profession.
The 2010 Diagnostic criteria (link on the right hand side of the above page) was developed mainly for use by primary care professionals like GPs. It may be more suitable for use with men, as part of the issue with the Tender Point test is that men often score lower, even when the specialist doctor is sure they have Fibro (this may still be down to how the test is performed as it is rarely performed ideally). There is more info on the test and the difference between Tender Points and Trigger Points below:
The issue with diagnosing Fibro is that the diagnostic criteria pretty much only work when ALL other possible causes of your symptoms have been ruled out or identified and isolated. With some conditions that can get confused with Fibro, such as Myofascial Pain Syndrome, most doctors are not appropriately trained to even diagnose them, which makes it all very difficult.
Hi thank you for the replies I haven't made my self clear my doctor referred me to the rheumatologist and he discharged me without a diagnosis .The rheumatologist then referred Me to pain therapy .And last week I received a letter for physio is that the same as the pain clinic. Thanks again for all the comments and info.
hi Joseph,it was the physio, who diagnosed my fibro, and organised for me to see a fibro specialist.Physios see a lot of patients with fibro, well they do at my hospital in Stockport. I was then referred to the pain clinic,who then put me on a course with 12 other sufferers, and over the course of 8 weeks, we were shown the best way to manage the pain, and had discussions with several different specialist, and therapist At the end of the 8 weeks, if you did have fibro, you would know it yourself, from what you have learnt..I too suffer from terrible jaw problems that causes shocking pain, this was my first symptom, but is very common.Hope this is a bit helpful to you,but perhaps you can see now where the physio is coming from.When I went for physio they gave me acupuncture which was very soothing but the effects didn't last long, that was when they realized that there was something underlying. Good look to you.
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