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Could Fibromyalgia treatments offer hope for IC?

Could Fibromyalgia treatments offer hope for IC?
Category: News
Posted: 04/13/2010 10:20:32 PM
Views: 2902
Comments: 9 [Read/Post]
Synopsis: Here's an interesting editorial from one of my favorite urology websites, UROTODAY, by Dr. Phil Hanno inwhich he asks us to consider looking at how other chronic pain syndromes, such as fibromyalgia, are treated.. wondering and considering if these should also be pursued for bladder pain syndrome/interstitial cystitis. - Jill

Editorial - Strategies for managing fibromyalgia

Written by Philip M. Hanno, MD Thursday, 18 March 2010 BERKELEY, CA (Reprinted with permission from UroToday.com)

What Can We Learn From Other Chronic Pain Syndromes?

Now that “interstitial cystitis” has been recognized as primarily a chronic pain syndrome, with the nomenclature revised accordingly (“bladder pain syndrome”), it seems there should be synergies and economies of scale in studying associated chronic pain syndromes. An interesting review on strategies for managing fibromyalgia by Leslie Arnold from Cincinnati, Ohio caught my attention, and is worthwhile reading material for those with an interest in BPS.

The review begins with the statement, “The presentation of fibromyalgia is heterogeneous, and the treatment approach should be individualized for each patient based on the severity of the patient’s pain, the presence of other symptoms or comorbidities, and the degree of functional impairment.” Certainly this could apply to BPS just as well. It goes on, “The management of fibromyalgia involves the treatment of not only pain, but also the other symptoms or disorders that commonly occur in patients with fibromyalgia, such as fatigue, sleep disturbances, cognitive impairment, stiffness, and mood or anxiety disorders.”

Both pregabalin and gabapentin have been employed to treat fibromyalgia, and the results have been similar. Pregabalin studies resulted in an FDA indication for the disorder. Randomized trials showed improvement vs. placebo in treating the pain of fibromyalgia of 28.9% to 13.2% (significant), 42% to 35% (insignificant), and 48% to 30% (significant). Success in the latter two studies was a 30% reduction in pain diary score. Generic gabapentin showed a 51% response compared to 31% response to placebo. Both drugs appeared modestly effective, but further data on gabapentin is unlikely to materialize given that it is available in generic form. Randomized clinical trials of these drugs for bladder pain syndrome have not been reported.

The author notes a lack of data supporting the use of opiates in fibromyalgia and the fact that use of opiates continues to be controversial. This is not only because of the lack of supportive efficacy data in fibromyalgia, but also because of the abuse potential of opiates and the emerging evidence of opioid-induced hyperalgesia. Recent preclinical studies suggest that chronic use of opioids induces neuroadaptive changes that are mediated, in part, through the neurkinin-1 receptor and result in enhancement of nociceptive input. The potential development of opioid-induced hyperalgesia might limit the usefulness of opioids in controlling chronic pain over the long term.

The pain and fatigue of fibromyalgia provide the rationale for using exercise as a treatment modality. For many patients, a gradual increase in exercise, as tolerated, to reach a goal of 30 to 60 minutes of low to moderate intensity land-based aerobic exercise 2-3 times weekly appears to be associated with positive short-term benefits.

Cognitive behavioral therapy (change the way we think to feel / act better even if the situation does not change) , operant behavioral therapy (changing observed pain behaviors using video feedback of pain expressions, contingent positive reinforcement of pain-incompatible behaviors, and punishment of pain behaviors), and attention control (general therapist guided discussions) may all have a place in treatment, but it is important to match treatments to patient characteristics in order to improve outcomes.

A review of acupuncture concluded that there is no evidence from rigorous clinical trials that it is effective for fibromyalgia. Mindfulness meditation and Qigong movement therapy also failed to show benefit in a controlled clinical trial setting.

Finally, education is considered to be an important therapeutic option that can be combined with other treatment. The author concludes that exercise, education, and perhaps other nonpharmacologic therapies accompany pharmacologic treatments to optimize results. It appears that we have much to learn by studying treatment trials of other chronic pain disorders and adding the evolving techniques to our own treatment of bladder pain syndrome, not instead of, but in addition to our bladder specific therapeutic interventions.

Am J Med. 2009 Dec;122(12 Suppl):S31-43 10.1016/j.amjmed.2009.09.009

Comments on Could Fibromyalgia treatments offer hope for IC?



Tracy G. 06/03/2010 04:37:38 AM
I have both illnesses and I was hoping that I could find ways of sleeping, without a doubt the biggest problem with both illnesses, together truly a waking nightmare. The opiate I use is Duragestic mat patches, for years! I was on Supadol /oxycodone(sp?) for a few month in the late '90 but it was horrible! up & down like a junkie & every 6 hrs, just horrible!

I did find some temp help with Lyrica this Feb. till it made me very ill & I was literally throwing thing; I was unable to stop myself, my whole arm, hand included would just spasm & fling out without notice until it was every few min. + I was SOO weak & sick, all only after a few days on it!?! VERY SCARY!! The very best drug is Baclofen, a MS muscle relaxant & my most valued drug, almost zero side effects (& I GET them ALL, sadly). Baclofen never makes me tired or weak like all other relaxants & is very good at reducing pain as well!

Diet is also SOO important, veg. + good meat, yea protein!! plus min. grains, as fibro. usually means IBS, so IC is just another similar illness to all the others that we(fibro. warriors) battle. Like I said though in the beginning, SLEEP & lack of it is what hurts us the most!! So how do people with IC sleep???? Oh yea, meditation, acupuncture, cranial sacral & others do work despite what the article says, it just cost & you have to keep it up. The cranial sacral really worked wonders on my pelvic amazing results!!! Reki really work with fibro. + it is what keeps me going mentally, it has to be done daily for at least an hour but you can do it watching Tv. so it is easy to do.

Last Prayer! yes Prayer, to whom you feel love for, I am A lover of Jesus but all Prayer helps! When I stated Praying in earnest for help & guidance I ended up here! I hope this helped?

God Bless, Take Care & Be Safe.

ICN Response: HI Tracy!! Love your willingness to offer suggestions for other patients. That's how I define a true IC angel... that despite your own struggles you make the time to try to help others. It's a lovely, lovely gift.

Sleep can be challenging. In IC, it usually relates to pain from bladder wall irritation and/or nerves that are overactive and giving you frequency and urgency. Is it pain or frequency and/or urgency that's keeping you up?

Jill
Nanette F. 06/05/2010 04:29:04 PM
It has been a VERY LONG time since I have connected with this site as I always had problems with my computer system. I HAVE to try again. I have taken Pyridium Plus (PP) and all of the other meds in the same class for over 10 yrs. As of last Fall I was informed there was a generic form of PP and it would cost me a lot less. Now 9 months later I am being told that NONE of them are available anymore. I have tried every pharmacy in IL and I am being told the same. Without my knowledge my Insurance Co. sent me Prosed without any reason. Their website continued to show that Phenzoforte Plus (generic for PP) was available and was their preferred medication. I challenged them on why they did this and searched their website to see if the Phenzopyrid Plus was still available and poof...........it was no longer in their list of medications. The PP, and this Phenzopyrid worked for me as well as Pyrelle Plus, or helped with flares. Now, none are available and they sent me the Prosed and charged me $50.00 saying it is not on their preferred medication list. I was paying less than half than half of this for the PP and the other PP.

I am on a lot of medications for Fibro and now this is really messing me up. I am fearful of taking the Prosed because it has an "Aspirin" derivative in it. I take Prevacid do to what is call "Nut Cracker Esophogus" and acid causes this to give me horrible chest pains. Baby aspirin is like eating battery acid to my stomach. Now I am stuck with this Prosed the Pharmacy sent me and they will not take it back and will not take the charge away. I have 2 problems here, the first is what can I do for my IC pain and the 2nd is I DON'T have $50.00 to throw away. I need to know more about he Prosed, please will someone who has multiple problems with medications contact me or reply and tell me their bodies response to Prosed?????? I feel I have been lied to and stolen from by the Pharmacy.

ICN Response - Hi Nanette and welcome back. I research drugs at the website DRUGS.COM. Or you can go down to your local library and use the Physicians Desk Reference. Your local hospital library may have it as well. Normally, it's your pharmacist who can give you the best feedback on drugs and side effects. You could try a different pharmacy or, better yet, talk with your doc. We don't give medical advice and just don't have an answer for you due, in great part, to the fact that we all seem to have very individualized drug sensitivities.

I'm so sorry you're having so many problems. Hey, if you paid with a credit card you could always protest the charge through the drug company. Or you could contact your State Board of Pharmacy and file a complaint. Big, giant hugs to you! - Jill O.
Lu P. 09/26/2010 08:44:04 PM
I would like to join you ladies and become friends. I have IC, Possible Fibro, possible lupus, fatigue and a constant sharp, burning pain in my lumbar and right flank that has me out of work for 3 1/2 years and no relief from any doctor or diagnosis. I am desperate for help. I also take the PP and it is the only thing that has helped out of many Rx tried. We need to get the PP to be kept on the market. I am 54 and it is the best. Prosed did nothing for me. Thanks...:))

ICN RESPONSE: Thank you for your comments! We suggest that you visit our main support website THE IC NETWORK and ASK FOR MORE INFORMATION ABOUT FIBROMYALGIA TREATMENTS IN OUR SUPPORT FORUM!
Em G. 10/07/2010 02:30:44 PM
I actually take gabapention aka neurontin with opiates and I can honestly say that the two of them put together seem to help me ALOT more than just taking the opiate alone. I have a severe case of IC so when I got a little relief from this mixture of medication I was quite surprised! I know everyone is different so what helps me some may not help everyone.
rolladex 09/09/2010 08:02:27 AM
I had the same problem with the pp - when I discussed it with my Doctor - he said he could still prescribe the medication - it would just be two generic pills instead of taking one - so two generic co-pays instead of one but still less. Try asking your Doctor if he do this for you. I have IC, Fibro, Chronic Fatigue Syndrome, IBS, Chronic Migraines, lupus, and a recent diagnosised heart condition - still running test - never a dull a moment but as long as I can breath, smile and be held in my loving husbands arms - I'm happy.
Kimberly S. 07/15/2010 12:29:52 AM
I'm very surprised that a discussion of fibro and IC doesn't mention the Fibro and Fatigue Centers. Jacob Teitelbaum, M.D has created the most comprehensive, successful fibro treatment in the country - and it addresses IC Disease also. His SHINE protocol (Sleep, Hormones, Infection treatment, Nutritiion and Exercise) was the best, most comprehensive treatment I could have ever asked for. Correcting my adrenal fatigue, thyroid and hormonal issues put my IC and Fibro in about 80% remission. Identifying a systemic chylmedia pneumoniae infection and starting the correct anti-biotic protocol took me to 100% remission. I am very, very grateful for the work of Dr. Teitelbaum and would recommend their extensive testing to anyone with chronic issues.
Kelly S 07/21/2010 10:54:13 AM
Hi Tracy G! Just wanted to thank you for your input. I too live with both Fibro and IC. I have also found that Baclofen to be a life saver. Not many people understand having both (along with other things). Reading your post was like reading some of my experience and gave me the feeling of being a little less alone. I have been neglecting my prayer - another good reminder to look to the one above...Thank you again!! - Kelly S
Jennifer 09/17/2010 11:27:10 PM
Hi all, it is comforting to know I am not the only one with multiple chronic health conditions. I too have IBS, IC, Fibromyalgia, CF, and migraines. I went through an amazing program offered by a rehabilitation hospital in my hometown this spring to treat the symptoms of Fibromyalgia. It involved physical therapy, and occupational therapy, as well as treatment from a psychologist, RN and Physician. Building strength, flexibility, endurance, and learning stress reduction and management techniques proved key in managing my flares. I do believe that some of this benefited the IC symptoms as well. Don't give up hope, there are resources out there if you're persistent and look hard enough. Love to all- Jennifer
Jennifer G. 09/21/2010 02:16:44 PM
Nanette~ I take prosed, and have been on it for about a yr. now. At first I noticed that it helped with vulvodynia, but after awhile it seemed like it didn't help anymore. I've actually stopped taking it this week due to having to get surgery for the Interstim transplant this Friday. I have fibro, IC, IBS, vulvodynia, spina bifida occulta. I just started taking Lyrica about a month ago, and it makes me dizzy, so I take it before bed. Not noticing much help with pain though. I'm on 50 mg per day, Dr. said I can increase it to 100mg per day, so I may do that after my surgery.


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