Interstitial cystitis and fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by hollebob, Jun 14, 2006.

  1. hollebob

    hollebob New Member

    Does anyone know of a link between these two conditions?
  2. caroleye

    caroleye New Member

    Inflammatory conditions.

  3. place

    place New Member

    I think I am on the verge of getting one!
  4. mrsjethro

    mrsjethro New Member

    I'm not sure what the link is, but I definitely have both.

    Place - I don't know on the supplements.

    I drink lots of cranberry juice. I take an OTC medicine "Cystex" if I get caught off guard without my antibiotic. It contains an antibacterial agent and analgesic both. My Urologist keeps me well stocked in Macrobid, but I've had a lot of tests done to see exactly what is causing mine. Me and the Urologist are on first name basis...

    I feel your pain, I've got another uti that just started up again this morning. Chugging cranberry juice as we speak!!

  5. painache

    painache New Member

    I C I believe is one of what is referred to as the Fibro 5 People with fibromyalgia usually experience other challenges. I think Migraine headaches, interstitial cystitis, irritable bowel and TMJ can go along with fibromyalgia.I have interstitial cystitis,TMJ,irritable bowel and fibromyalgia. The protective lining of the bladder has perforations in people with IC and one the the worst things you can do is drink cranberry juice. It's like pouring acid on a cut.One of the first lines of defence against I C is to watch your diet. NO acid drinks like pop coffee or tea.The medical community does'nt know what causes IC and treating is also a challenge. There are some excellent sites for IC patients.If you type in interstitial cystitis in your search you should be able to find some of these sites. Hope this helps. Pain
  6. mrsjethro

    mrsjethro New Member

    Thank you Painache!!!

    I'm glad you told me that!! They told me that I could drink the cranberry juice, but I've got a big list of basically anything else with flavor that I'm not supposed to eat or drink. Is that relatively new? I've had this for a really long time and they've never told me that.

    Thank you!! More than I can say!! I'll pour mine out now. I don't need any more trouble than I've already got.
  7. painache

    painache New Member

    mrsjethro No I think this has been known for some time. Many people are not familiar with this disease. I found out about IC by reading an article in the readers digest and realized the symptoms I was experiencing were the same as the ones described in the article. I had told my doctor on more than one occasion that I was having pain and other symptoms but this was not addressed because of other problems with my health.So basically I suffered in silence for a long time.The IC network is one place to find valuable information.One juice that is usually well tolerated is pear juice.I have a book my daughter gave me that has been a great help You Don't Have To Live With Cystitis by Larrian Gillespie. There is a great section on Interstitial cystitis and a few pages that discuss fibromyalgia and interstitial cystitis.

  8. pawprints

    pawprints New Member

    I have noticed alot of us suffer from both IC and CFS, etc. It may be an autoimmune condition. The advice about diet is very important to getting the condition under control. There is also a drug called Elmiron which may help you.
  9. jimbbb

    jimbbb New Member

    I did a search over on the MP board for anyone with IC -- At least a couple people listed it. Both had elevated 1,25D levels (in high 40s range) as would be expected for overall Th1 systemic disease (which IC is associated with).

    If you look up LH1953's postings (including one logged under Success Stories) you'll see that she mentioned she had been on 3 or 4 medications at start of MP for IC and has discontinued all of those. She did not say her IC went away (and she mentions taking a PH controlling supplement for it). She is still actively working thru the MP at any rate.

    You could always private message her over there and ask her directly. She's very active on that board.
  10. mary124

    mary124 New Member

    I have IC but not Fibro. Dx with it about 18 years ago.
    IC Network is a great site to get information -- there is a lot of people on that board as well who has both.

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