I have Chronic Pain which has been going on more than 10 years. IC, Fibro, IBS, Mitral Valve Prolapse, Osteoporosis/Arthritis and Depression (big surprise there!) possibly an autoimmune disorder. I have an unsympathetic Primary doc, a great ARNP who works with her Urologist husband and tried to see the pain doc that is well known in this area. He refused to treat me because my main reason for wanting to go is the Interstitial Cystitis and he said he has had no success in treating it. He does not want to just block the pain but fix the problem.. That is great, but when you have diseases that have no cure it isn't too helpful. This is unrelenting pain that is affecting my entire life. When I'm not working my full time + some overtime hours job, i'm home in bed with my heating pad. I worked here for over 5 years before I could get hired full time with health ins and benefits. I CAN'T lose the job. Sex is out of the question right now, but my on again off again boyfriend is basically just my work partner right now so that's not an issue. I would like to enjoy sex again... I'm 59 and divorced after a rocky 30 plus years marriage and finally able to take care of myself. I'd never lived alone... I went from getting pregnant at 15 to a short marriage, moved back in with my family and my baby girl and then married again before I turned twenty, had another little girl and began taking dance lessons after a 15 year break and went on to teach and perform professionally, mainly in the Orlando area. I moved away and worked at a variety of studios... whatever I could find each time we moved. We settled here in a lovely beachtown in 1993 and I found another place to teach, but the challenge was gone... no real dancers to work with, so about 15 years ago I quit teaching. Now I work as a Network Administrator and "train" computers and their users. Out of desperation I made an appointment with a Sports Rehab doctor who at least agreed to see me. He did such a minimal exam my cat could have done better. First visit he gave me hydrocodone 7.5 ES which I had been taking through my Urologist at the 5/350 level. No help, so second appointment I asked him for a med that I didn't have to take every 4 hours. He put me on Avinza 60mg. once daily. As it built up in my system for a few days I noticed my bladder pain was easing off. I was able to work and felt somewhat better about life. Around the second month I began to feel spacy and noticed my joints were aching much more than usual and my work was suffering. At the end of the second month my knees hurt so bad that if I had to bend down I felt like I couldn't get up again... my hands were feeling so stiff and painful and I was experiencing swelling in my feet and legs. During this period my mother died at age 83 and my sisters and I stayed with her for three days and nights at a wonderul hospice until she took her last breath. There was a chair that pulled out into a single bed and I think I spent more time sleeping than anything else... I could NOT stay awake. When I got home I had missed a day for the avinza, so I took one and then I decided to get off the pills. Not much withdrawal... worse was when I quit Paxil cold turkey! Within days my joints improved and I could move my hands without wanting to cry. Knees are better, I'm much more alert, but sadly the bladder pain is back with a vengeance. When I told my primary that I had seen the pain doc and got the avinza he was not happy. I also take cymbalta 60mg... started that for depression but now it is approved for several of my other conditions. I take 50mg of hydroxyzine for the IC as most IC patients seem to and lorazapam helps a little... I've had an rx for 60 1mg pills monthly for years, so it is not addictive to me. After I quit the avinza I went back to the Primary doc and told him the Urologist had given me the 5/350 hydrocodone. I told him I was still in a great deal of pain and he said that the hydro was STRONG stuff and to take an occasional Aleve... but not too often. I realized this doctor had no clue what I was going through, and my urologist can only given me the hydro and I get bladder instillations every week or two... oh and I take Elmiron which is the only med approved for IC. It only works in about 30% of the patients and I said I'd give it a year this time... this is my second go round with the drug and the instills.
I feel like this is no way to live... work, go home and lay in bed with my heating pad. I think I might be able to get some relief with a different opiate or possibly 30mg of Avinza, but I can't handle the horrible achiness and spaciness again. I've used the fentanal patches years ago... I think I was up to using 2 150mg patches at a time. I generally have a high tolerance for meds as well as pain. Oh yes, they tried the Medtronic implant trial on me... it helped with the frequency of IC but did nothing for the pain and I got terrible diarrhea to boot. Horribly, some people actually have their bladders removed and STILL have the pain. I live in the Central Florida area... if anyone knows of a doctor that understands that all these illnesses... IC, FMS, IBS,MVP and chronic pain often go hand in hand I would love to know about such a doctor or clinic. My ARNP thinks I also have pelvic floor dysfunction related to the IC as well. There are therapists who do massage for this but I doubt there is one nearby. If I could get some therapy and massage and get some exercise along with a medication/medications that I could funtion with I think I can keep from really losing my mind!