I agree with some of this. It is an awful disease and it takes a toll on your spirit. IT causes you to pull in , maybe do less and in doing so....use less of your body.
When you use less of your body things will give in. Muscles will not perform and arthritis can set in in the older population.
We are in pain all the time, our meds lessen it to a degree of a life. WHY we all got here, I don't know. I have beat my brain in trying to figure this out. But it doesn't change the reality that we are broken.
It is turning to be a chemical, neurological issue and rhematology was considering sending it all the neurology...but it seems that didn't happen.
I see neurology, always have. I am on the same meds as others here. I push like the dickens to move and be as much of me as I can. Man it is tough. If I didn't work for the distraction it gives, I would be worse off. Getting your mind on something other then the actual-pain is so important for me.
We are all at different levels of this, some chemically balanced a bit more then others. It is so complex an issue. I feel for the docs as much as us. To not be able to totally help someone is a BIG downer for them as well. Frustrating to the core.
It does not effect organs or degenerate our bodies, but i totally agree that it degrades the spirit and your ability to cope at times and continue with this valiant effort we all make everyday.
I say we live "Groundhog Day" like the movie.....no matter how good i get in a day, when I sleep and awake..it starts over again!! That is depressing.......
I hope you can get to a better place soon. Maybe a change in the meds or a change in doc...might be what is in order to assist you. Some here have gone all the way to Fentanyl patches...the problem is there is NO WHERE to go after that...
That is the ceiling in pain management.
It, in my situation is better to use all the tools that are non medical to make me feel better...TENS machine, hot patches...showers...stretching...eating carefully, hydration etc...(as found in the toolbox under resources and Caprice)
Then to keep going up on my meds. I found the answers are not in the PILL.
I have changed my meds a few times and at present am using double my doses as I am in trouble...but when I get out of this mess I will pull back.
My needs are different then yours, but I know i have a lifetime of pain ahead fo me...so i am careful to use all avenues before my my meds to be better.
I also know that when I am this frustrated...my pain is worse.
Doing something really good for you is also a pain med..
Get out and do an enjoyable thing....I learned working in Hospice that the endorphins of the holidays lowered ALL PAIN across the board for patiebts and I had less on-call calls....
It was true. I use this knowledge for myself. I get in a GOOD PLACE to get the endorphins and help myself....
So, that is my take. I hope you figure this out. I also speak of the book I lean on. FM and Chronic Myofacia Pain (a survival manual) by Dr Devin Starlanyl . Amazon.com a good investment.
I so hope you get some relief, I know this tunnel you are in and the light you are looking for..........Hugs from me, Nancy B