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Hi all, happy new year to you.....Help!!!
7 Replies
kerrythecarebear - December 31

I am new to this forum, but i am so glad i found it! I have been suffering with FMS for 18 years, although only officially diagnosed 6 years ago. This is the first website i have found that gives honest and open answers to what can only be described as a very complicated illness!! I am having so many problems with my Dr's that most days i feel like i am banging my head against a brick wall! To begin with, they didn't want to diagnose anything, told me for years it was 'growing pains'. Even though i eventually did get a diagnosis, ever since, i have had ongoing problems, and although i see my Dr regarding them, i find i do not get the help that i need. For example, for the last 2 years, i have been suffering with bladder problems, getting very painful spasms etc. Every time i consult the dr, i am being told i have an infection, yet every test comes back clear, they even said i must have an infection in one of the fallopian tubes, yet i had a hysterectomy over 4 years ago!!! I think i have IC,(intersistial cystitis) but they refuse to do the tests necessary or to refer me to someone else, am i the only one having these problems?? If not, has anyone any suggestions how i can get the Dr's to listen to me? I feel i am near the end of my tether now! This is so painful and debilitating, it is affecting my every day life, as i can hardly move for the pain! I have a family that needs me but i feel i am useless to them while i am incapacitated by this, dealing with the pain of FMS is bad enough without having this to deal with, or the ignorance of the dr's!

 

BRENDA - December 31

Kerry, I have had bladder problems too. It feel like an infection, but the test come back normal! I have taken the antibiotics that the DR gave me, without any improvement ! It always seems to go away on its own! One thing I do though, is increase my intake of H2O! I already drink LOTS of H2O, but when I feel one of those BLADDER THINGS coming on I double up in the H2O & add cranberry juice!! I didn't have this problem till they put me on a slew of meds for my FMS & lupus! I think maybe it's the meds that are causing my problems! Hope this helps & WELCOME to the forum!!!!

 

Jeannie3 - December 31

Hi kerry, You definitly need a Dr who is on the ball. Which Dr diagnosed you? Is he still in the picture? Usually the route with Drs who have diagnosed FMS will test all other avenues with each symptom. Mine had taken me through 3 years of testing before she gave me the FMS dx. Since then Drs have kept up on the usual diabetes etc tests. So if you're origional doctor isn't around is it easy for you to search for a doctor who deals with FMS or a rheumatologist might be a good bet.

 

kerrythecarebear - December 31

Hi Brenda, thank you for ur info...unfortunately, i have already tried all that you suggested, and yet i get no relief!! I've stopped taking all the FMS medications a long time ago, i sound they weren't doing me any favours. Thank you for your kind welcoming too!! Happy new year to you!

 

kerrythecarebear - December 31

HI Jeannie.. Unfortuantely, once you are diagnosed, you are basically left to your own devices here, so the consultant i originally saw, i haven't seen for 5 years now. I keep going back to my GP, but to no avail, i have seen several doctors in the practice, only to be brushed off every time that it is an infection, they do the usual urine tests, pump me full of antibiotics, the results come back clear every time, and they won't pursue it any further! After just having had another flare of it again, they are sending me for an ultrasound scan, but i have a feeling, that yet again, nothing is going to show up. I have learnt alot about this illness, that the only way to properly diagnosis is through cystoscopy, the only way to truly treat it is through bladder washes or antispasmodic medication, but the doctors just dont want to know. to top it all off, the doctors in my area are the only doctors around, so i can't even change to a different practice! I have been told i could buy the medications over the internet from america, but i would worry about them being allowed in through customs in England, where i live..i really do feel alone on this one. The FMS i have learnt to deal with as best as i can, but this is something that i feel needs to be sorted and i dont know how i can without the help of a decent doctor. Thank you for your advice!

 

ontoplady - December 31

I would change doctors if I were you. Sometimes naturopathic doctors are better are dealing with Fibromyalgia. I was diagnosed with "emotional" problems because I had severe anxiety and insomnia, only to find out later that those can also be symptoms of Fibromyalgia. Keep trying,you'll find someone who can help you. Good luck!

 

ontoplady - December 31

Another though, a certified homeopathic doctor might well be able to help you with bladder symptoms. THey seem to do well with chronic issues that allopathic drs. can't help.

 

kerrythecarebear - December 31

thank you ontoplady, i will look into homeopathy in this area, i am willing to try anything!!!!!!

 

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