hi
I agree with you it is very hard I cannot have half of the tests done so they guess , I would have to be removed from all my RSD medication to compete all the fibro test. So I get an educated guess I am getting really tired of all the experimental drugs and test to see if something helps . So I put up with the pain and suffering Good luck isabee

I'm writing this so you know not to give up and there is always hope if you stay positive. I was always a very active person. I showed and jumped horses, ice skated, hang glided, went all over the US, many times by myself. When I was 24 I was driving on a narrow, dark road on a moonless night, and hit a motorcycle. He was drunk, dressed all in black, his motorcycle was black, he had run out of gas, and was coasting down the hill. The police report says it wasn't my fault, (I was going 20 miles less than the speed limit). I am told that I got out to help him, and someone ran over both of us. I am told this probably killed him at that point.

I keep saying "told" because I lost a great deal of my memory, not only from that night, and many other things. I had one broken shoulder, the other cracked, my hip was twisted sideways, and they had to pull glass from the headlight out of my abdomen, internal injuries, a multiple fracture at my wrist, head trauma, (they pulled bone from my skull out of my brain), plus I was in a coma for several days. Forgive me, there were other things, but I don't remember. Lol

I was in a partial body cast for several weeks. I had to relearn to walk, talk, plus I had hallucinations for months afterwards. I forgot who my Grandmother and boyfriend was. To this day I have trouble remembering certain things. The worst is anything mathematical, maps, things like that.

Although I've had other injuries that sure didn't help my preexisting problems, most of what's wrong with me chronically leads back to this accident. It was pure hell for over a year. I couldn't imagine how I could go on.

But I did go on, and I'm so glad I did! It's true I was never as active, but I went on to go and graduate college with a 3.9 average. I taught middle and high school kids, and had two of my own. And until a few years ago, I found a job that allowed me to travel all over the U.S.

Don't give up! Stay positive. That is the first and last advice I can give you. Stay positive!

Good luck. If I can help in anyway, feel free to shout.

Jeanne (AmiaEagle48)

Could a "gentle" chiropractor help with the neck and back pain.
I'm totally against the harsh manipulations they do, but I got a lot of relief once when I had back pain immediately after surgery.

It's terrible that you've had to deal with so much pain for such a long time.

My chronic pain is from diabetic neuropathy. Lots of guilt along with the pain. If I had cut out most carbs every day, I would not have had to deal with one night of this pain. I'm doing great with my eating now, but only because of a recent complication and the accompanying terror. Lots of guilt and shame.

I hope you get relief soon, and some uninterrupted sleep :)

There are ways to help the conditions you have, especially the fibro and peri. neuropathy. You didn't mention if you're on any meds for either. I've been on lyrica since it came on the market and it helps me tremendously and I thankfully have few side effects from it. Others find Neurontin a better med for them. They won't take away the numbness but they do help with the pain.
The key to fibro is to stay as active as you can. I know how hard that is with the profound fatigue of fibro but any amount of exercise you can do will help. I've found the best exercise for fibro is warm water PT. if you have a therapy pool around you (wellness centers often have them) then I'd suggest you get a script for water PT from your doc and you'll have 4-6 weeks to see if it helps and you won't have to pay the fees for the wellness center until after the script runs out. I've been doing it off and on for 15 years and have always felt my best when I'm in the pool 3x a week. It helps the pain and improves the fatigue.

Also, getting restorative sleep is essential. Many docs will prescribe low-dose tricyclic antidepressants to help you sleep better and they really do work. I'm currently taking trazodone and my sleep has improved immensely.

As for keeping positive, I see myself on a path that God has put me on. Like Jeanne, I was very active before being diagnosed with lupus and fibro and most recently RSD. I worked 2 nursing jobs, one of which was flight nursing, I worked out at the gym 5 days a week, I travelled extensively, skied, rock climbed, all of that. Then I was diagnosed with lupus and fibro and had to quit flight nursing which was so devastating to me. I got very depressed until one night I prayed and asked God what I could do now that I could no longer be a nurse. I heard very clearly "Be a grief counselor". What a perfect fit! I could use my experience both in trauma and oncologyhospice nursing and still help others. I decided to go back to school for my BA in Christian Studies and have 6 classes left til I get my degree. I know I won't be able to do this full-time but even if I can help in my church, it will make a difference in someones life.

You have to first accept the situation. you do go through the stages of grief when you develop a disabling illness. Once you can accept what your life is now, you can think of just what you can still do, or something you've always wanted to try but you were too busy.
I hope this helps in some small way.

Sandy

Oh, m, I feel for you sweetie. Have you been taking any meds that could account for any of your symptoms?

I'm thinking thyroid, but your endo should have thought of that (and maybe did).

I hope you get to geeling better. I know just how tired "tired" can get.

Sending up prayers for you doll.

Thank you guys so much for your replies. It really warms my heart. I had the radio frequency thermocoagulation (I know, big name) this morning. My neck and shoulder hurt really badly right now. They said the pain could be bad as long as a month before the effects of the procedure are felt. They think I might get a year's worth of relief. My mom and I have been talking though, and we're not sure it's worth it to have it done on the left side.

I know that I have disc fragments lose in my neck and herniated discs, along with the things in my lower back, and we're wondering if surgery would be helpful. My aunt has a lot of problems with her spine as well and has had surgery on both her neck and lower back. I think it might be worth a shot. Aunt Wendy said her pain level dropped drastically after the surgeries.

The surgeon had said that since I'm 24, he didn't want to do surgery. He said I am too young. Well, I lose health insurance coverage with my parents when I'm 26. I think I should do the surgeries prior to that while my parents' plan covers me. My lower back is becoming increasingly worse and I'm uncomfortable and hurting no matter how I sit or lie. I am getting a TENS unit on the 14th to try and help the pain. I do get gentle manipulation and some physical therapy.

I have been on Neurontin for well over a year. It has quit helping so we now are trying Savella. Today was my first dose of it. I am getting on it even slower than the starter pack recommends cus the pain management doc said the side effects can be bad. I used to use Trazadone, but I had an issue with overtaking it. Since then, I am loathe to try most sleep aids. They don't work for long. I am currently taking 100mg of Seroquel to help with sleep. Honestly, 150mg worked better, but the potential for weight gain worried me.

I go on walks just about every day and I swim sometimes in the pool at my apartment complex. I feel wonderful in the water...I've always been drawn to it. I was a scuba diver for a while, but I had to stop when I wasn't able to equalize my ears. I feel really self-conscious right now due to all of the weight gain, so I don't go swimming too often. I sometimes ride the recumbent bike on a low resistance and I do very gentle resistance work.

Again, thank you guys for listening and responding. It makes me feel valued. I can't talk to my mom about a lot of this stuff. She doesn't understand the anxiety and depression I struggle with. She is uncomfortable when I cry. Thank god I have a wonderful therapist. It does get really hard though in between appointments. I don't feel I can burden what friends I have as they are all dealing with things. It gets really lonely.

~Megan~

Well, you just come here any time you need a friend to "unload" on. We're here for you any time.

Gentle hugs dear.