Arthritis, Dystonia, Nerve Damage, etc.

When my doctor asks me "Do you have pain anywhere?" I reply, "Well, my left foot feels pretty good. So do my ears." And that's pretty much the way it is.

I credit my childhood for helping me live with pain. Since coming within ten minutes of dying from an allergy reaction to a prescription pain medication when I was just twenty-two, I take only Acetaminophen when my pains get too intense, or I just get tired of it hanging around. I also learned, with the births of my two sons, what a difference there is when you're all tensed up or being totally relaxed. I practice the relaxed thing a lot. 

I've had arthritis in one knee since age 20, and can hardly walk when a storm front comes, expecially in Spring. I have intense muscle spasms all over my body that just comes and goes, fairly quick, thankfully.

I had cervical (neck) Dystonia for five years. I woke up one morning with what I thought was just a pretty bad stiff neck. In the first year I would feel like molten lava was flowing from it down my back whenever I did anything. I was lucky though. It finally went away, and only pulled my head over to one side by about 1/2 inch. Before it went to my neck it was in my jaws, and I was unable to chew normal for four years. I had to make sure my teeth were aligned, and then force my jaws up and down. Took over an hour to finish half a plate of mushy food, and when I'd finally give up, I was worn out. I used to describe what I went through by likening it to the difference between driving an automatic and a stick shift. Unfortunately most I told that to had only driven  automatics. 

It really amazes me the number of conditions, diseases, or whatever that so many people are dealing with now. I remember when there was just a handful of things people got. It wasn't like it is now.

I had all the symptoms of Sjogren's Syndrome, but my lung doctor tested for that before going into my lungs to see what the problem I had was, and said I tested negative. That made me happy. So I drink lots and lots (but not too much) water, plaster my skin with lotions (thank you Dollar Tree stores) and use lots of eye drops for my super dry eyes.

No, I really don't have my plate full. Actually I have a lot of other things wrong, including a nasty lung infection, but after reading all the things so many on this forum have, I feel pretty normal. I take life one day at a time, and enjoy each day doing the things I love doing, like letting my mind run wild, writing, reading, limited painting, and working in my small yard when weather permits, and I don't think about all the stuff going on in my body. If I was fifty or younger, I would probably be trying to fix it all. But at 75, I figure it is what it is.

My treatment plan is what I've come up with, and follow. I'm doing pretty good on it, at least most of the time. I stopped seeing the specialists I was under, and may continue to see my pcp once a year, but maybe I'll just see him when I have a new problem.

When I was a kid back in the late '30s to '50s, kids weren't getting the the kinds of things that affect so many now. Nor were the young adults. I think many of the things affecting us now are environmental-related. The skies back then weren't blanketed 24/7 with jet airplanes. Back then everything didn't have a quick fix with some deadly spray (there was DDT though). I could go on and on, but I won't.

I found Sjogren's Syndrome while looking for info on arthritis for my older sister - who'd actually wanted info on Alzheimer's Disease, but said the wrong one. This sydrome was listed as something people with arthritis seemed more prone to get, and I got a 65% on the symptoms test they had, with quite a few questions left unanswered because I didn't know what they were. The disease attacks the moisture producing glands.

I have very dry eyes, and had three torn retinas in two and a half years. My skin gets very dry, as does my sinues and mouth. So I do what I can to keep them moisturized.

And I totally agree with you that seeing a specialist is a good thing. I've seen many of them, and had many tell me they had no idea what my problem was. I live with several conditions in that category. I just got tired of being offered some prescription or another that "might do something for it." I'd even tried a few, and ended up with more things wrong. Since 2001, I've done little but sit in doctor's waiting rooms, some for 3 to 4 hours at a time. So I sort of retired from it all.

That's quite a load to carry from birth. The Cerebral Palsy would be bad enough, but to have it be spastic as well. Are you in a wheel chair?

Don't know if anything I have is related to birth. I was born way late, and my survival was iffy for the first year, and I was the only one of my four siblings to see a doctor, and I was constantly seeing one for the first eight years for various things.

I used to go to the Dystonia forum, and there was so much pain expressed there. There was a TV documentary about this disease, with people who had it. An implant of some sort had been developed that kept their limbs from twisting backwards and one girl disconnected hers to show what she'd gone through before. It was unbelievable. I worried for a time that mine might move from my face and neck, but knew worrying wouldn't change anything, so I put it out of my mind.

A couple of years ago my whole leg, from foot to hip started going crazy, and moving like it was an individual entity. I'd have to hold it down with my other leg. It was also very painful in certain areas. Tests showed it was caused by nerve damage in my back. Also have nerve damage in both feet.

I feel very lucky to be able to manage with just Acetaminophen.

Wilmey, I have dystonia and I have an implanted baclofen pump to help manage mine - this works by releasing muscle relaxant drug into my spinal fluid. I've also had Botox injections into my worst muscles - my lower leg muscles, ankles and feet are permanently contracted.

Dystonia - or any kind of spasticity - is a horrendous thing to deal with. Most of my attacks last minutes to hours, but my worst was more than 48 hours with my entire body in spasm.