I went to my doctor on Friday to discuss my Interstitial Cystitis and the possibility that I may have fibromyalgia but I don’t think he really took me very seriously about the fibro. Basically he said fibromyalgia is not a condition it’s just a number of symptoms put under that heading. He said it would be no point sending me to a rheumatologist as there are no tests to diagnose it, I said what about the ‘tender points’ and he said oh that’s just the same as acupuncture points and anyone would hurt if they were pressed! (apparently he practices acupuncture). My shoulders have been in agony where he prodded me to prove the point! I even took some literature with me which I had printed off the net, he read it and said ‘this sounds American’ (as you know I live in the UK) and his remark was ‘well there you are, it’s different over here’!
When I said I had private medical insurance he did offer to refer me if I wanted but basically said ‘I don’t know where to send you as most rheumatologists don’t recognise fibro, I suppose I could get my receptionist to hunt around for one‘. I don’t know if that’s encouraging or not.
To be honest I think it’s him that doesn’t want to recognise the condition! The one good thing was that he was quite understanding about my Interstitial Cystitis and actually recognised that as a medical condition!
I’ve been under this doctor for 3 and a half years (since I moved counties) and in that time have only ever seen him twice and never about my IC or other related symptoms (I have a sort of fear of the doctor, I was brought up that you mustn’t bother him unless you’re practically dying). Because of this I’ve really suffered in silence but the pain and other symptoms have now got so bad I need to do something about it. I'm wondering if he doesn't believe me because he has no record of what's been happening to me lately ie the back/neck/shoulder pain and other related symptoms.
I don’t really know what step to take next. In a way I’m afraid to take it further and go and see a rhummy because if he turns around and says you don’t have fibro I will feel like I have wasted both my GP’s and the rummy’s time. I know this is a stupid way to look at it but as I said that’s how I was brought up!
He has put me on Amitriptyline (my suggestion to him!) for my IC which I know (from reading posts on this forum) is also sometimes used to treat the pain of fibro. I am hoping this will bring some relief.
Do you think I should push to see a rhummy or should I wait and see if the ami does any good? He’s said to take 10mg for one week then 20mg for the second week and then 30mg the third week and continue with 30mg before going back to see him. I’m sure I’ve read on here that ami isn’t useful long term for fibro although I believe it is for IC.
I would really appreciate your suggestions, at least I know I will be taken seriously by you all on here.
Kind regards, Debbie
To me, a doctor who ignores your symptoms or implies that it's all in your head is a huge red flag. "It's different over here" is a ridiculous excuse to give when refusing to treat a patient. Is this supposed to me an Americans Only disease? I would get a second opinion asap. I don't know exactly how your referal system works, but I would do some research and find the best Rheumy in your area. And then, since your doctor apparently knows nothing about Fibro or Rheumatologists, I would take the name to him and say "I helped you out and found the name of a Rheumatologist. Please write the referal for him/her." If this guy is so lazy that he'll have his receptionist look up a random name in the phone book rather than take the time to find out for himself who's good in the area, then he'll probably jump on the chance to just write it and be done. There is absolutely no reason for you to continue to suffer. Your pain is real, and you deserve to be taken seriously.
Can you tell this situation jumps on all my hot buttons? I had a doctor (surgeon actually) a couple of years ago who ignored my complaints and told me my problems were all in my head. I ended up in the hospital for two weeks and could have died. I don't put up with doctors who treat me like that any more. Their job is to help me reach the best health possible. If they aren't doing their job, I find someone else who will.
Mojolou, I agree, ask around, research, call doctors but find another doctor. your health is too valuable to waste because someone won't listen.
I suffered for 5 years and decided enough was enough. Would he/she let someone treat them that way....NO. I asked around in my area, researched site, etc. When I found a dr that had been recommended, I went back to my dr and told him why I was switching.
Post Edited (Sherrine) : 2/8/2009 9:05:50 AM (GMT-7)
Hi Debbie and welcome, welcome, welcome-
We have plenty of members that don't have an exact diagnosis but you can probably bet they have fibro and they are so welcome here! Sorry to hear that you are having to go through so much with finding a Dr. that knows fibro. Sherrine could not have said things better and I hope you can find a Dr. soon. A-h-h England- have always wanted to vacation there and I hope to some day!
Nice to meet you-
A-h-h England- have always wanted to vacation there and I hope to some day!
GamJill, lovely to meet you too.
If you ever make it over to England you are most welcome to come and stay with us. We live in a very beautiful part of the country, right beside the sea, infact the only thing between us and America is the sea!
All the best Debbie
How pretty, by the sea- and thank-you for the invite!
Post Edited (Sherrine) : 2/9/2009 10:38:23 AM (GMT-7)