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Chronic pain is not who I am

  • kitty
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7 months 4 weeks ago #27695 by kitty
kitty created the topic: Chronic pain is not who I am
I have suffered chronic pain for most of my life. As a child I had arthritis in my shoulders, knees and joint problems. I managed a pretty normal active life despite the crippling pain of childhood arthritis. Being active was my rebellion. I continued with a very active lifestyle, working out most days and playing varying sports, for many years until back issues slowed me down in my 20's. In 1999 I had Epsteen Bar virus followed by Ross River Fever not long after. I went on to have fibromyalgia and chronic fatigue. I also had worsening back issues with disc and vertebrae problems In my lower back and neck, that have now spread to most of my spine. In 2006 I had a work accident requiring shoulder surgery. Pretty routine stuff except during surgery oxygen supply was minimal and I suffered poisoning that caused a stroke. I had another 2 days later and to date have had more than 55 strokes leaving lasting damage in varying degrees. Largest took 2yrs of intense rehab to learn basic skills like, walking, talking, reading, dressing etc. I also have had one large aneurysm, with major surgery, and have just had 2 more found which require surgery in the near future. I suffer a lot of muscle pain and nerve pain due to stroke damage. I have been through the system of Drs and Specialists. Each with their own ideas and treatments. I have tried both natural and conventional treatments over the years. Unfortunately many many Drs believe that chronic pain sufferers are only depressed and suffering anxiety. The stigma that follows FM/ CFS etc is still prevalent today. Many people do have depression and anxiety in varying degrees but this does not supersede the fact that these painful conditions are in fact very real and very debilitating. I have been put on the roller coaster of medication, Lyrica, Amytriptylene, Prozac, Gabapentin, Efflexor, etc. These are known to help with blocking the pain messages to the brain and nervous system. Some work, most haven't. Some made me very ill. About 10yrs ago I started seeing a pain specialist. He saved my life in more ways than one. He provided continuity between Drs, and started treating me for pain. I was put on Duragesic Patches and OxyContin. The highest level was 75mcg/48 hrly and 3 X 10mg OxyContin per day. I had previously been on panadeine forte, OxyContin etc. I was told the Fentanyl would be a long term solution/treatment with the outlook of lifetime use. It was a Godsend. I could walk without excruciating pain, move around and leave the house. I was stable on 62mcg/48 hrly and 10mg OxyContin twice daily. About 5 years ago I started early menopause. Hot flushes were my nightmare. Anywhere up to 60+ per day. They were unbearable with heart palpitations, nausea, dizziness..I was housebound again. I started on Oestrogen treatment which helped to a certain extent. I noticed that due to perspiring so much the Duragesic wasn't working as well and I was suffering withdrawal daily. I was put on different things but nothing helped. I also had severe insomnia, only sleeping about 3 hrs broken sleep a night. Once menopause was finished the symptoms continued. I had muddled through the continual withdrawal situation with the patches etc. I had a feeling that the Duragesic was actually making the flushes worse. I mentioned this to the endocrinologist and other specialists. None thought this was the case. I really did believe that it was causing my issues. Along with the fact that I had aged so quickly in a few short years, skin and hair was horrid, stomach issues, sunken eyes, no energy. I made the decision to take my life back. I had no idea that stopping the Duragesic and OxyContin would be so horrific. I was given no information in the beginning and was amazed to find out that fentanyl is 80 to 100 times stronger than morphine. I started weaning myself off the OxyContin. No real issue. Then the Duragesic. I had read that you could cut the patches without the gel so that's what I did, # I DO NOT RECOMMEND DOING THIS! # I took a little off the edge every week or so. It was okay to start but quickly became unpleasant to say the least. I had been advised against stopping the medications due to my health problems and pain. I was concerned about the ineffectiveness of the patches and didn't want to go up in dose like recommended by the specialists. It took me a long long time. But I did it. Just 2 weeks ago I took off my last patch! I was down to 12mcg /48hrly. Unpleasant is an understatement regarding the effects of coming off this medication. It is truly inhumane. I am on 10mg and 15mg OxyContin daily and a little more if required. So far this week I am okay. Not great but okay. I believe tapering very slowly from the fentanyl was the best thing to do for me. Several times I went too quickly and ended up very very ill with heart issues and very nasty side effects. Numerous hospital stays. I finally spoke to the pain specialist and he surprised me by being extremely supportive. I shouldn't have doubted him. He really is a wonderful Dr. He has helped me with the last of the tapering, although I stopped the 12mcg earlier than scheduled. My next visit I'll be able to tell him I am fentanyl free. So far I have felt very very lethargic, flu like symptoms, lots and lots of pain ( however I expected that). One of the worst symptoms is an all over anxiety. The OxyContin has helped take a little of the effects away but certainly not all. I had been meant to have my dose increased for a few weeks at least to around 80mg per day but I thought I'd try to do it with less. I have found that they aren't lasting very long and I'm pretty uncomfortable about 6/7 hrs after taking it. The anxiety and twitching of my body is awful. I find I cannot cope with it for very long at all. Although many symptoms have lessened in the two weeks some are still pretty bad. I have found myself agitated and even teary at times but it doesn't last for too long. Fatigue has been hard over the last few months. A lot of days not able to be up for more than an hour at a time. It is improving though. One symptom which has improved immensely is the hot flushes. They are almost gone! After 5+ yrs it is the biggest relief. I can't even express how much they were effecting my life. I was at the point where I was praying each night to be set free so it would stop, and that's frightening as I am not that kind of person. I couldn't cope and being put on different medications all the time wasn't helping. I was so ill.
I am so excited that I've done it! I still want to get off the OxyContin but am in no real hurry as I have rotten increased pain to deal with now. I will revisit some old pain treatments, lots of gentle stretching, lots of meditation which I have always done and find it helps to cope, and see what other treatments my Dr recommends. I still have chronic insomnia. I haven't slept more than a few hrs a night for over 5 years. I'm hoping it will improve. Medications are not on my agenda at the moment. I need a break. My poor body has had enough. They are so toxic. I will have to weigh up pain verses medication free and see how I go. I am open to the fact that I can't not take some medicine but will start again at the lowest levels possible. I know I may have to revisit the Fentanyl again at some point but for now I am so happy to have it gone. At least I will be in a better position when Its time for the brain surgery I have to have. There's another hurdle to conquer. I feel really proud of myself for being strong enough to do what I've done. That's saying something as I've never been proud of myself before. I am so very lucky that my children and husband have been there to support me throughout the journey I've been on these last 15 or whatever years. Today is our wedding anniversary and it's a special one. I couldn't have gotten through all this without my wonderful husband. Sorry for the long post. It's good to write it down.

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7 months 2 weeks ago #27711 by Johnno
Johnno replied the topic: Chronic pain is not who I am
Wow Kitty,

You've been knocked down so many times yet you have got back up again so many times I am impressed you have so much willpower the words "Wonder Woman" just barely cover your strength to keep on fighting , having a loving family to be so supportive is great oh and "Happy Anniversary " a bit late I'm sorry .
You have gone to hell and fought your way back .
It was a jaw dropping roller Coast read but I'm glad to have read it .

Johnno

as long as I wake up alive I'm happy
Because it could be worse

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