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I've been to my doctor - not very helpful

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Posted 2/8/2009 2:03 PM (GMT 0)

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
Posted 2/8/2009 2:30 PM (GMT 0)
Hi Debbie!
Hmm, tough call, I don't know anything at all about IC. But I would let your GP know that you would like a second opinion on the fibro. Since you haven't seen him too often for pain he might be reluctant. Maybe it's time to see a different doctor or see a rhummy.
My doc. does accupunture and he understands widespread pain.
I'm taking the same med that you're taking and tramadol for pain. It seems to be helping so far. But I just started taking it about a month ago.
I hope you find a doctor that believes in you.. My opinion is to find a doc. that treats and believes in FMS.
Good luck!!
Warm hugs,
Posted 2/8/2009 2:50 PM (GMT 0)
Thanks for your reply Patti, I really appreciate it.
I think the trouble is that in the UK we are far behind America in understanding or researching certain conditions. I know when my IC was diagnosed about 5 years ago it was relatively unheard of in this country but a lot of research was being done in America at that time (my gynacologist told me this). I think it's the same for fibro and that is why it's harder to find a GP or specialist who will recognise or accept the condition.
My husband says I should see if the ami works (he's just pointed out it was actually thursday and not friday that I went to the doctors, my memory is terrible! ). I have to go back and see my GP in about 5 weeks when my supply runs out and hubby says if it's not doing any good by then then I should ask for a referral.
Posted 2/8/2009 3:12 PM (GMT 0)
Hi, Debbie!  First of all, you shouldn't feel like you are "bothering" any doctor.  After all, YOU are paying him/her so that makes YOU the boss!  You are hiring him/her to help you with your health...just like you would hire a professional plumber to help you with a plumbing leak in your home.  There are doctors out there that think they are gods and yours just might be one of them.  mad

 

If I were you, I'd get on the phone and start calling doctors to see if they treat patients with fibromyalgia.  Just flat out ask them!  You could call Internists or Rheumatologists.  They might even have it listed in an ad in the phone book.  Maybe even the hospital can guide you to a good doctor.  But, you do want a doctor that believes in fibromyalgia.  That's how you will get help.  It has to be so frustrating to go to your doctor for help and not get any.  We have doctors like that in the States and, believe me, I'd "fire" them!

 

You mentioned that your gynecologist knew that fibromyalgia was being researched in America so they might be keeping on top of the new things in medicine.  You might try calling them and see if they know of a doctor that is treating patients with fibromyalgia.  You might be surprised.

 

Guess what?  I just did a search and found this site showing doctors in the UK that are "fibromyalgia friendly"!  Hope one is near you!  Here is the link.

 

  http://www.ukfibromyalgia.com/advocacy/fm-friendly-doctors.html

 

Yes, we are in different countries but fibromyalgia doesn't only affect Americans!  What a stupid statement...we are different over here.  Baloney!  He's just ignorant about fibromyalgia and doesn't know how to treat it.  That' my humble opinion.

 

I hope this helps you, Debbie.  Let us know what you find out.

 

Sherrine   

Posted 2/8/2009 3:19 PM (GMT 0)

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.

Posted 2/8/2009 3:26 PM (GMT 0)
Thank you so much for your post Sherrine, I've just checked out the link to the website which is fantastic but unfortinately I live in Cornwall which is the south western most tip of the UK (I live by the sea and if you keep swimming from my house you'll get to America eventually!) and all of the doctors/specialists listed are hundreds of miles away from me.
That saying, you have inspired me to do some more of my own research, I'm now going to have a real good read of that website and keep searching to try and find a specialist, who understands fibro, nearer to me.
I'll keep you posted on how I get on.
Many thanks again, Debbie.
Posted 2/8/2009 3:38 PM (GMT 0)

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.

Good luck! 

Posted 2/8/2009 3:47 PM (GMT 0)
Debbie, here is an article called Hands Across the Ocean and it says that there are doctors that came from Cornwall to this medical conference about fibromyalgia so there must be some in your area.  It gives names of some doctors from London...but I know that's way too far from you.  But, you might try contacting some of the doctors on the first list I sent you or even these doctors in London and they might be able to give a great referral.  See...doctors in the UK DO know about fibromyalgia...at least the ones that want to be leaders in the field of medicine.  I'm so glad to see this!

 

At the bottom of the article is an email address that could help you.  It is to a fibromyalgia association in the UK!  So, I think help is arriving!  LOL  Let me know what you find out!

 

http://www.fmaware.org/site/News2?page=NewsArticle&id=6048

 

Sherrine

Posted 2/8/2009 3:55 PM (GMT 0)
Sherrine
I have just found 'what to do if your medical professional refuses to accept Fibromyalgia as a REAL illness' on the website that you provided the link to. I have printed it off and when I next go to see my GP I will take it along for him to read.
Incidentally I did find and register with the Uk Fibro forum but did not feel very welcomed there. Basically I asked if it would be ok for me to post a list of my symptoms to see if they thought it might be related to fibro, one reply said something like once you have been diagnosed you will be very welcome on here. Does that mean they don't want to know if I havn't got the condition? I don't know perhaps I'm being too sensitive. Anyway if you all don't mind I'd much rather be a member of your supportive family.
Love Debbie
Posted 2/8/2009 3:59 PM (GMT 0)
Debbie, did you check out the Fibro 101 thread...the second thread on the forum.  I'm sure I directed you to it.  There is a link to a list of symptoms there!  This might help you too.  There are many informative links in that thread.

 

The fibromyalgia group in the UK probably dosen't want to get into "diagnosing" and neither do we.  We just list symptoms to help people see if they might indeed have this illness.  Then we encourage everyone to get a diagnosis because fibro mimics other illnesses.  A good doctor will rule out the other illnesses before giving you the definitive diagnosis of fibromyalgia.  So that is probably why you got the response that you got.  But, they could possibly help you find a fibro friendly doctor in your area.  It's worth asking.

 

I'm glad you found something to help you.  I would contact one of the fibro friendly doctors that is the closest to  you and see if they know of any fibro friendly doctors in the Cornwall area. 

 

Sherrine

Posted 2/8/2009 4:30 PM (GMT 0)
Sherrine
You have a really good way of putting things, i've noticed this many times when reading threads on here. You always make perfect sense and offer good sound advice.
Yes I will post on the Uk forum and see if anyone knows of a fibro friendly doctor in Cornwall.
Thank you.
Posted 2/8/2009 4:39 PM (GMT 0)

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-

GamJill

Posted 2/8/2009 6:27 PM (GMT 0)

GamJill said...

Hi Debbie and welcome, welcome, welcome-

  A-h-h England- have always wanted to vacation there and I hope to some day!

Nice to meet you-

GamJill

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

Posted 2/8/2009 6:56 PM (GMT 0)
Sherrine I think I've cracked it!
Inspired by your words I have sat non stop at my computer (I won't be able to stand when I try to get up but never mind!) and I found an article on Sjogren's Syndrome which had a reference to Fibro. This was written by a Dr Charles W Hutton a Consultant Rheumatologist based at Derriford Hospital in Plymouth Devon which is about an hour away from where I live. It is one of the main hospitals that serve my area. I did some more indepth research on Dr Hutton and he has NHS practices at Plymouth and Holsworthy (Holsworthy hospital is not a main hospital he probably only holds a clinic there once a month or so). Holsworthy is 10 miles away from where I live now, infact I was born there and only moved away a few years ago, I still probably spend as much time in Holsworthy as I do in my current home. Dr Hutton also has a private practice in Plymouth and as I have private medical insurance I could see him quite quickly if my GP will refer me privately. I also found articles on pain management trials carried out at Derriford hospital in Plymouth for cronic conditions such as Fibro. Infact the pain management consultant (Dr A Davies) lists Fibro as a particular area of his expertise.
Clearly Dr Hutton and other consultants at Plymouth must be familiar with and recognise Fibro as a genuine condition. This has given me new hope. I have printed off all the relevant information and will hand it to my GP when I go back to see him in about 5 weeks, when my prescription for ami runs out.
I can't believe that my GP told me I'd have trouble finding a Rheumatologists that would recognise Fibro as a condition. Plymouth is our major hospital!
Anyway I feel much more positive now, I let you know how I get on.
Thanks for all your help.
Love, Debbie
Posted 2/8/2009 8:12 PM (GMT 0)
Hi Debbie and welcome if I have't welcomed you before (fibrofog). I'm glad you got all that straightened out and found a doc. Your doc must have graduated at the bottom of his class. mad I too found the rheumy I wanted to go to and took his name and number to my GP and told him I wanted a referral.

 

I've been on 100 mg of ami for 11 years. I was on it for anxiety when I got fibro. I tried cutting back last spring and went into a flare from hades so I don't believe it stops working for fibro. I'm not going to cut back on it again to see what happens. smilewinkgrin

 

Many people have taken the info on here and that has helped them get a dx of fibro so we welcome everyone who may have fibro.

 

luv and hugs

Marlee

Posted 2/8/2009 9:19 PM (GMT 0)
Hey!!! And Hooray!!! Great news and once again Sherrine to the rescue!!!! God, I love this forum. High Fives all the way around!!!!
Posted 2/9/2009 12:33 AM (GMT 0)
Wow - your original post really amazed me. What an arrogant doctor! (And a fool, to boot, I might add.) I'd get another GP, personally. Fibromyalgia IS recognized by the Rheumatologists Association (I think that may be American - I'm Canadian so...not sure). And many Rheumatologists know exactly what it is and how to test for it. My Rheumatologist told ME what fibromyalgia is, and I didn't have to print anything off the internet. She's very young, mind you, so that may make a difference.

I'm glad you found someone in your area that will listen to your concerns and be open minded about it.
Posted 2/9/2009 3:16 PM (GMT 0)

How pretty, by the sea- and thank-you for the invite!

GamJill

Posted 2/9/2009 5:22 PM (GMT 0)


Debbie, all I can say is "WOW"!   I'm sooo happy for you and that isn't much of a trip either.  It also sounds like you have found some really knowledgable doctors in the field! That's why I told you that your GP doesn't know anything about fibro but didn't want to admit it.  I'm so glad that I could help you and that you did all that research to find your answer!  You will get help now.  This really made my day!  I'm really excited for you!

Don't stop coming here, though.  We love having you as a member and will be here for you whatever your need.  I'm looking forward to hearing more from you.

Sherrine


Posted 2/9/2009 7:29 PM (GMT 0)
Thank you everyone for your support and kindnes. I will continue to read all the threads on here and will let you know how I get on.
Love to you all, Debbie
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