I have had FMS for many years now, but I was only told about this illness just a few years ago but my occupational therapist. No test, no examination. Just a chat and opinion, I feel she was right. But, how does one get a diagnosis, I ask my GP for a second opinion and he feels seeing someone else would not be worth while.
When you deal with the likes of the benefit system you have to have paperwork and solid proof that you have this illness, yes!
So how do you do it? What tests do I need? Which department at the hospital do I need to be referred to? Your advise please. I just need to know for sure that I have FMS or something else. Please help me, thanks.
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deelightful
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Yes you can get a diagnosis, your GP should refer you on and you can insist on it. I was lucky my GP referred me on to Rheumatolgy the Consultant there diagnosed me, I thought I was going mad for years and was struggling on until I finally crashed and felt so ill the GP took bloods which shown a raised CRP (inflammatory marker) so by default I got the diagnosis of FMS. Dont give up, be assertive good luck
I am so confused by this -when one reads about FM one of the 'key' points is that there is no inflammation! Yet, I know for myself I have this -although I've never had my bloods tested for it. Definitely be assertive...and as mentioned, a rheumy is generally the professional who deals with FM (although my GP just did a 2min tender point test and agreed that was what I have). For benefits, I keep detailed journals and sent those in with my forms.
hi deelightful, not nice to be diagnosed like that , ive had fibro for 21yrs first off it was sciatica then spondalosis but it was a rheumatoligist that diagnosed me with fibro around 9yrs ago so i think you need to ask for a referral
hope it goes well for you x
I totally agree with Leonie. My GP has diagnosed FMS and CFS but has also referred me to a rheumatologist to get a definitive opinion. Some folks are refered through a neurologist as it really depends on the area in which you live (I am in East Cheshire). The specialist will also be able to refer you on to a Pain Clinic as well as offer advice on your meds. Go for it!
it takes quite a long time to get a diagnoses but you need to keep going back to your g.p not sure where you are based but some areas have specialised FMs clinicsome others have rhuematology dept there is no definate test for FM all that drs can do to show you have it is rule out everything else if your GP wont listen (happens all to often) then change them for a different one that is what i did and then only took 3 moths to diagnose after 5yrs of getting nowhere (oh and countless blood tests lol) and then physiotherapy saying that they couldnt be any help. hope this is some use to you good luck in getting the answers you need .
I agree with all of you i got my diagnosis from a rheumotologist good luck x
Hi Deelightful, I can only advise you about my own personal experience so please bear in mind it could be different from others' experiences.
I went to my GP after I'd been struggling at work for a few months with pain and exhaustion. I was referred to a Rheumatologist at my local hospital. There I had urine tests, endless blood tests, the tender point test after a full examination of my arms, legs, head, neck, shoulders, back, hips, legs, feet. My reflexes were checked and my range of movement in my limbs. My full medical history was discussed along with my work and job description, my sickness record, operations etc. Also when I first noticed symptoms and what they were etc. I was tested for Hepatitis, Lupus, Thyroid, MS etc. I also had an ultrasound scan and xrays.
After my second appointment I was diagnosed with Fibromyalgia and then about 6 months later with CFS/ME and then RLS.
I went through the range of meds from Co-Codamol, Tramadol etc., so eventually my meds were stable and really helped my pain and fatigue.
These days I see my GP for repeat prescriptions and only see my Consultant Rheumatologist if I am worried about a change in my condition, that hasn't happened yet as I am quite stable and manage well these days.
I hope this helps Deelightful. I am sure others will post and tell you of their experiences.
The first thing you need to do is to ask your GP for a referral. I hope it all goes well for you.
Take a look at the info contained within this link, it's from our main site. It tells you how Fibromyalgia is diagnosed -
great advise, I have an appointment soon, so I will ask to see a rheumatologist . I really appreciate your comments. It is nice to know that someone cares and I am not alone. Thanks again.
I spent ages (years) practically begging my GP to find out what was wrong with me - I already suspected FM but he kept saying it was a diagnosis of elimination.
I'd been having serious problems with my jaw locking and ended up seeing an Oral/Maxilliary Consultant. It was during an examination of the inside of my mouth he touched something on my top palette and I ended up needing to be scraped off the ceiling. After that happened the Consultant diagnosed TMJ and asked if I found my GP to be quite dismissive of a number of other symptoms I might have been having so I said yes to which he answered "I thought so, I think you might have Fibromyalgia" & he said he would say as much in his report. Next time I saw my GP I asked him now that someone else thought I had FM could he eliminate it please - he got me an appointment with a Rheumy consultant and she diagnosed the FM.
Hi I just got sent for some xrays of my knees and back I saw the specialist for the results he then told my doctor to send me to the pain clinic as I had hyper mobile joints. This took 3 months the get to my appointment in the mean time my doctor put me on some pills called gabapentin or something like that as she said the pain clinic would put me on them so we might as well get started on them. I had to stop taking them before my appointment as they made my ibs really bad and did nothing for the pain. I got to the pain clinic the lady poked me all over which was unbelievably painful. That was it she told my I had fibro and told me to try the tenns machine she gave me and she rote to my doctor to tell her I had fibro and should be put on to amitriptyline which should help with the pain and my sleep.
Hi fb is driving me mad tryed different tabs even steriod injection witch helped for sll of 2 weeks did not take all pain away either any suggestions plz other things o could ask my doctor to try x
Hi Dee I agree push for a rhumatolagist appointment I was quite lucky after all the xrays which showed nothing I saw the rhumatolagist a quick 5 minutes painfull pokeing and proding I was given a diagnoses of non articulate rheumatoid disease, which I found out from a friends was fibromyalgia by another name , that was about 18 or so years ago. Keep pushing and keep your chin up good luck. Gentle huggs
i got diagnosed by the pain clinic but they missed the hypermobility at the time.
My joints got worse and im now using a wheelchair for pain and fatigue management.
i agree with asking for a rhematologist, try asking under 'patient choice' ie you can choose a professional excluding mental health professionals.
i got my fibro diagnosis a few weeks before xmas in 2005. My HMS came August 2011.
Try looking up the patient charter to check out your rights, get a different GP if this one is unsuitable for you. Mine is better with elderly patients.
That's pretty much how I was diagnosed, then I send to the Immunology Clinic where I was put into the severe catagory for both FM and ME. Finally I could do some research to help myself. I found there is no one test for both of these, it is trial and error, a series of elimations to come the conclusion of diagnoses. As there is yet to be a cause found for FM there is no one treatment. However, gentle exercise and relaxation techniques are beneficial but you only get out what you put in. You are entitled to a second opinion. I found it helpful to explain why I want one; "In order to apply for benefits I need proof that I am ill" etc etc....request a letter. What I do is give my written permission for the relevent authorties to have access to the relevent medical details. Meaning they are only allowed to look at the history involving the diagnoses and treatments. As well as giving permission and details of who is treating as well as my GP. Good Luck.
hello deeightful. keep pressing your g.p about seeing someone. ive found that notmany doctors believe in fibro and think that it is all in one's head. ive been suffering since 1996, when i was nursing. first it was ciatica then after alot of symptons and trips to the doctors and many painful days and nights, i was diagnose in 2007. im still trying to get to grips with it and sometimes feel alone with this ilness. ive been asking my doctor to refer me to see a speciaist about how im feeing. and as forth theb dla, what a joke that is. i was given low rate care and mobility in 2004, then when i was given my diagnosise, i was told to apply for middle rate. so because i couldnt write very well, i asked a support worker to help me fill in the form for me. which he did( it was the first time that he had filled one in) when he had fillled it in, heasked me to read it and sign it. but because i didnt understand the questions on how long or far i could walk with the pain. i just read briefly and sent it off. i sent it in the febuary and by the april they where telling me that they was taking my low rate off me. and they did and now im too tired mentally and physicaly to fill out the form again. and also my bills have suffered now too. thats probs why im gettings headaches.
Nikki, thanks for your advise, I would like to tell you about a web site I have used and would highly recommend. benefitsandwork.co.uk/
It helped me fight and win my appeal when I lost my awards for both care and mobility. There is great advise and information on how to word questions. It is worth every penny for the subscription (£19.47 per annum) you get that back plus.
It is tiring reading but do it in stages and you will get what you are entitled to, I found the advise better than any other means of help. You read about others too who have been in this situation and get help from them. Try it. Love to hear how you get on.
Sometimes I wish those at the DLA could live just a day in our lives and they would see and maybe understand what pain can do to a person.
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