Sorry to hear about your pain and how it is affecting you,,,ofcourse we will be bitter-in pain-can't control it and yet it TRIES to control our lives..we can't let it..we each HAVE to find a way to continue to do what we want! It sounds like you need to find something more to do in your life...an hobby,a sport,just SOMETHING that is a daily or every other day event for you to participate in and find a reason to want to eat,to want to LIVE thru the pain and everything else life is throwing at ya..because life is worth the fight!

Hello all,

I think fairlady and Red make a great point. We can't compare our pain to others. It's not a contest. We all have it and handle it in differnt ways. I am leery of saying that I work becasue i am aware that others cant. But I barely work and struggle to do so. I don;t compare my pain to others only in that I know others are in more pain than me and my heart goes out to them.
My fatigue is caused by my brain injury. It is a side effect. When you have a brain injury, everything takes thought and effort. Taking a step. Brushing your teeth. I'm not sure there's a cure for fatigue. Many of my brain injured friends have even tried speed. Only after trying everything else.
I enjoy playing poker but that takes time and energy. And wife complains about it. I win most of the time.
But I feel so much better now that I got this out at CP. I am working to be better and enjoy life. Thanks to everybody.

Amexdm

amex--
You mentioned ( after trying everything else) some of your friends tried speed? How did it work for them ? Has your doctor tried that (for you) for the brain fatigue?
There are a couple of ( RX) options now that ( yet basically the same thing as "speed" ) docs will prescribe for appropriate uses... (of course- not saying you don't already know that... )

Also wanted to mention... kudos to you for making these posts- it takes a lot of energy...

Ladyfair,

Thanks so much. It does take alot of energy to post these. So much that I'm too tired to go to CFS forum lol. Really.
Yes my brain injury support site we all have fatigue and tried SO many differnt things. Rest, diet, less work, everything. Nothing worked. So one lady tried speed. Stimulants I guess. Adderall. rRitalin. I guess they worked short term but were not a long term solution. Also Wellbutrin. I did discuss this with two of my doctors and we agreed it wasnt for me. I am afraid they would give me a heart attack. I am very sensitive to even the slightest stimulants like caffeine. So docs and I agreed no. Not worth the risk. If you know of any light speed let me know lol. Thanks.

Amexdm

I'm sorry if I missed this but what type of doctors are you seeing? A neurologist should be able to handle your issues best. But you also need to find one with experience with your particular condition.

Hi Tigg,

Good question. A neurologist SHOULD be able to handle my condition. They don't do a very good job of it. I have been to 5 neurologists including the "best" in the area. Most people who have my condition die in the first 24 hours. So the the neuros position is bascially you should be happy to be alive but there's not much we can do for you. Sad but true. There are no doctors with experience with my condition becasue it is rare and it's not worth their time to be knowlwedgeable of it. Sorry to be negative but it is the frustration of my case. Yes, Im alive but with chronic pain, fatigue, memory loss and TIA's. Not much of a life if you aske me. But I trudge on. Thanks.

Amexdm

Are you continuing to have TIAs? Maybe a cardiologist would have some ideas. My dad had countless TIAs due to heart disease and I guess a genetic problem. After he had one he would sleep for 12-18 hours. This was how we knew he had another. He didn't have high blood pressure so there was very little they could give him to try to prevent the TIAs.

What I figured out looking back was that stress caused the TIAs. When his mom was in a nursing home and he would go to visit he almost always had one after. He would hibernate in his bedroom and come out the next day fine. Same for many other stressful events.

I wonder if a depressant would work better for you? I have a relative with severe Epilepsy. He has always smoked pot and it worked very well for him. They recently came out with a study and drug research that is saying a concentrated form of pot shows promise for treating epilepsy.

What part of the country are you in? I know the frustration of finding the right doctor. I have an eye condition that is almost unheard of at my age so there has been no research into a fix. I had two top doctors tell me yes they see it but there is nothing to do. So I'm left treating the symptoms instead of finding a cure.

Hi Tigg,

You are right on. I slept for 18 hours last Saturday. I have had 3 what I would consider "major" TIA's in the last 9 months. Called 911 on one of them and the paramedic said that I may have "hundreds" of small TIA's over the rest of my life. She also said the doctors dont know what to do with me, which I believe her.
But boy stress sure does casue the TIA's. My first one was after i was threatened to lose my job becasue of sick time. I dont have chronic high BP but occasional episodes. The only thing that helps is sedatives. maybe depressants as you say. Xanax works wonders for me.
I do need to see a cardiologist, been meaning to. Maybe he can help. Plan to see one this summer or sooner. It is hard becasue i have many dr appts and a full time job. But during the TIA's it feels like my heart is going to explode. Afraid of the big one for sure.
I am in Michigan. Only so many neuros. Thanks so much for your imput. The thing with stress causing TIA's really rang true for me!

Try to find a cardiologist and neuro in one group. I'd look for a heart hospital and go to their doctor group. This is where medicine is right now.

Another thing to consider is that each TIA is destroying a tiny portion of your brain. So while the brain will remap itself that portion will always be damaged. This is what is causing your memory loss. That portion of your condition is called vascular dementia. It is a form of dementia that is brought on by cardiac related events like TIAs. I don't mean to scare you but if you are having TIAs and memory loss you need to understand what is going on.

I would be looking for ways to reduce your stress immediately. You might need to sit down with your wife to figure out a path to earlier retirement or a change in jobs. Only the two of you can figure out that part but it's really important. TIAs may seem unimportant but they do cause permanent damage. Also they can hit at any time especially during high stress times like driving.

Hey Guys,

How do you deal with the idea of SERVERE nerve pain, chronic fatigue, numbness and tingling caused from a spinal cord that had limited you compared to where you were a year ago. As well I am SO TIRED of the nerve and not finding the right doctors to find me.

I am just plain tired. On of the limitations that the injury gave me was being faithful to my exercise the way I was. I lost 70 before the injury. I worked out hard to gain mobility back in the beginning (was paralyzed). However it FLARED up my pain big time. The injury was about a year ago. About a month ago I took a break from exercise for a week in a half. When I did my pain SUBSIDED big time. I am still working out now just doing lower impact exercises. I have gain weight for heaven sakes. Not good. I do not want to be diabetic in the long run.

Anyhow, I am having a hard time with the pain and limitations. I am at this time working on my Masters Degree, which is important to me, but a lot of work with my limitations and wears me out, but I am determined friends.

Hi Determined! I'd hate to see your post overlooked because it's on an existing thread. I think maybe more of our group would get the opportunity to see it and respond if you maybe posted a message introducing yourself to our main general discussion page. I mean no disrespect whatsoever...just think more of us will see it!

I don't have experience with nerve pain so I can't really answer your questions but I can welcome you to our group and say I'm sorry you are in so much pain.

(((HUGS))) to you and welcome!

~Michelle

I can understand why the counsellor's question about sex made you feel uncomfortable but it was a necessary question in order for him to get a complete picture of your life. Perhaps the questioning was a little insensitive in the way you were asked.

I take Tramadol as part of my pain relieving medication and it prevents me from having an orgasm - what a f****r!!

Serenity maybe it was the way the counselor asked about Amex's sex life. Or more likely it's a sensitive topic. Usually the things that upset us the most are the things that strike closest to home.

There have been countless studies about the effect of human contact to soothe people. Think of babies. When you hold them they feel secure. This is why they have NICU volunteers to provide human contact.

The same goes for sexual contact. Sure we can live without it but we can live better with it. So it's not out of line for a therapist to ask a married person about their sex life. Many people shut down when they are in pain. Maybe it's medications like Serenity said but it could be fear of being judged or more pain or rejection.

Was it the FIRST appointment when you were asked about your sex life?

Well if so... I don't care *who* they are... Dr. -- next door neighbor-- OR even someone in the WAITING ROOM at the Dr.s office ... if I don't know you and we have no rapport yet... its none of your business. You are a total stranger.
"So... hows your sex life?" "Great Doc... hows yours?"
"How do you **really** feeeeel about that?" LOL
Sheeeesh.

Hello all:

You guys are too funny. YES it was the first appt. As I said, it was a short appt. There was no segway in to the question. And I didnt ask for the therapy. i was required to go there from the Pian Clinic. Not that I mind trying. It came off as creepy to me. And it is none of his business right away. Build a rapport dude.
I would compare it to being on a first date. If you ladies were on a first date and the guy after 15 minutes started asking you if liked sex, you would tell him to bug off. Have some style and delivery. I am there for pain! Sex is the least of my worries. How does he even know I am physically able to? What if I wasnt? Then I'd really be offended.
BTW, He's one and done. Seeing a different one in April. A female psych. Maybe she will be better. And I may no mind as much those questions :)

Amexdm