Thank you all for caring, and sharing your deep insight into some of the far corners of this place where rsd takes us.

I'm never going to resign but I do know I need to more acceptance of this place I find myself.

I've been fighting the need to use a cane. On one side I know it will help take the pressure off the physical aspect of my RSD on the other side it has a huge psychological effect on me.

Fear is a powerful emotion that needs to be managed. Sure therapy can help but I think this support group is awesome, we all rise to the challenge to help each other and that is very special.

Functionality is my daily goal. Pacing myself will get me there. If I can keep exercising I know I can win, even better if I can do it without my extra meds. It's not always possible but I guess I can still look at it as a win if I can keep moving and keep it warm.

I thank you all for giving me so great food for thought. I enjoy reading your all your replies.

Allan we are kindred spirits, I just go too, damn the pain I love to travel.

MsL

This feeling of worthlessness is one of the hardest things for me as well. Ironically I'm doing research now that could have important ramifications for the very survival of the species (more likely it's a crackpot idea) which I couldn't (or wouldn't) even be doing if I were working and healthy yet still I feel worthless because I can't dig ditches any longer. When I cast about for things I could do or learn to do I soon realize that they are all impossible. I can't do even the simplest tasks consistently and the RSD does affect my brain function and memory.

I think everyone who his sick and disabled needs to find passtimes to occupy himself. Even things that can be done on bad days if possible. The internet is a lifesaver for me but I also have a sedentary hobby which can provide enjoyment everyday. My current research is fascinating stuff and keeps me occupied for hours on end. I still try to do my old ditch digging but it seems more everytime that this is something I may have to give up. I tend to get more and more help when such jobs need to be done.

It's funny how things change. My job was never really important to me and it was mostly just the means to a check but I always prided myself on the amount of work I could do. Now I'm just efficient; Can't do much but can get a whole lot done with a minimum of effort and one hand. And I feel guilty about not being productive. The RSD often feels like a box that's closing in on me.

For me this disease is about learning new ways to cope and new ways to do things. There are lots of days I shouldda stood in bed but there's no choice but to follow the road as far as is possible.

affecting our brain function and memory
 

[QUOTE=Imahotep;569960]This feeling of worthlessness is one of the hardest things for me as well. Ironically I'm doing research now that could have important ramifications for the very survival of the species (more likely it's a crackpot idea) which I couldn't (or wouldn't) even be doing if I were working and healthy yet still I feel worthless because I can't dig ditches any longer. When I cast about for things I could do or learn to do I soon realize that they are all impossible. I can't do even the simplest tasks consistently and the RSD does affect my brain function and memory.

I think everyone who his sick and disabled needs to find passtimes to occupy himself. Even things that can be done on bad days if possible. The internet is a lifesaver for me but I also have a sedentary hobby which can provide enjoyment everyday. My current research is fascinating stuff and keeps me occupied for hours on end. I still try to do my old ditch digging but it seems more everytime that this is something I may have to give up. I tend to get more and more help when such jobs need to be done.

It's funny how things change. My job was never really important to me and it was mostly just the means to a check but I always prided myself on the amount of work I could do. Now I'm just efficient; Can't do much but can get a whole lot done with a minimum of effort and one hand. And I feel guilty about not being productive. The RSD often feels like a box that's closing in on me.

For me this disease is about learning new ways to cope and new ways to do things. There are lots of days I shouldda stood in bed but there's no choice but to follow the road as far as is possible.

Ima, you have brought something up here that I work very hard at hiding. The severe memory problems are harder to hide, but the brain function- I am frightented when even a family member says" I think you should have help with that decision" It like -WHOA wait a minute my body is sick not my mind, I am terrified ( and threatnened )someone down the road is going to try to take away control of my life from me- due to diminished brain function due to rsd or meds. SCARY. Does anyone else secretly have these fears? The opana er really helps my pain, but I must say the side effect are not good in terms of staying sharp, no matter how many crossword puzzles I try to do. anyone else? cz

CZ that was becoming an issue for me when taking the ms contin. I didnt realize it was tied to the pain meds until my insurance was cut off, and I could not get any more meds.

It was hell going through the withdrawals, but once that was over, the fog was clearing, and my mind was becoming clear again. It isnt as clear as without RSD, but it is clear enough that there isnt talk of me not able to make decisions anymore.

For about a year I had no pain meds at all, and life was very hard. I think that was when I began to realize I had to get a grip on the mind over pain thing. Once I had medicare I could get pain medication again, but I only take a norco in the morning, and maybe before bed for pain. I can double up on them for the bad days, but drop back down when the pain drops off as well.

I still have serious pain that makes walking, and daily tasks very difficult. But also realize there is a trade off with the pain medications. To have the brain fog, or to be cognizant of what is actually going on. Even though you think you are fully aware im afraid to say that may not be the case.

Once I had been off the pain medication for a while, my family and friends were welcoming me back to the world out of the blue. Some friends were asking me what happened because they hadnt seen this me in a long time. It was a real eye opener.

I know the pain, and I know how hard it is to deal with, so dont let me talk you out of your pain meds. That is not what I am trying to do. Just letting you know it isnt you losing your mind so you dont have to worry about having anyone take away your decision rights.

If my insurance hadnt stopped I would still be on the heavy meds LOL! I actually am glad it stopped no matter how much it hurt me. It helped me come to terms with this RSD, and helped me to kind of learn to balance how much activity I can do before it is too much. Plus learn to cope with a lessor pain medication so I keep my brain clearer.

Sometimes though the pain is sooo great I think about asking the doctor for those heavy meds back, and I know he will prescribe them in a heart beat. Then I hear my wifes voice telling me how much she enjoys talking with me, and hanging out with me now that im not on those medications anymore, and I grit my teeth, take another norco, and tell myself I can make it through this. It hurts but I do make it.

There are a few ways my brain is affected. The docs think I'm nuts but I'm really not, I'm just describing the way this problem "feels" to me. It feels like there's a physical thing in my amygdala and to a lesser extent in the left cerebral cortex. I can work around some of it but it does often play havoc with some functions. Thought is mostly "unaffected" by this but proceeds abnormally. The result is the same it's just a different route. The gabapentin severely reduces my ability to see connections between disparate phenomena. The pain severely reduces my ability to focus and maintain my attention because it seems to require a small part of my attention to suppress the pain all the time. This can be largely overcome as well but but makes learning extremely difficult since the only way I know to learn is with full attention. Everything has to be broken up into two or three minute bits.

My memory is getting pretty bad. This runs in the family a little but I think this is independent of that because it seems to wax and wane with other symptoms.

For a while I was getting to the point that even paying bills and everyday responsibilities were tough but this seems to be easing a little. It might just be a change in habits since I now do things like pay bills right away rather than living on the edge as I was accustomed to. Short term memory comes and goes while the one minute memory tends to be where some of my big problems are. Walking into a room and forgetting why or going on an errand and forgetting the reason. The doctor thinks some of this is medication and I have no reason to doubt it.

One of the medications causes visual and olfactory hallucinations but if I keep the dosage low enough they are under control.

I had a breakdown when all this was coming to a head a few years ago. I just got to a point that I realized I didn't know what to do next. I couldn't do anything at all. All avenues were closed and I was a quivering mass of pain and fear wholly unable to function and barely able to ask for help.

I really feel fairly good now but the problem never gets very far away. They never gave me my papers despite repeated requests though. :wink:

I finally have doctors that I have some confidence in and I doubt the medication regimine can be much improved. All the reuptake inhibitors bother me and the depakote seems to take care of the ups and downs a little and provide a little analgesic effect.

I'm the same person I was but it might be hard to see from the outside.

Oh, here it is after 4 AM, and I've been awake for a while, two movies.

I've read the posts on this page, and I do not know the meds that are mentioned.
I take methadone for pain, diazepam for spasm/tremor, but since I've had a nasty TBI, (Nobody really expected my survival) Hah, fooled them!, my Neuro has tried many things for my cognition. (Not ignition, transmission, or television).

I take
Namenda, at bedtime, which he tells me is for nerve pain. (I don't notice it doing a lot, but a little, yea.)
It's an Altzheimer's med.

But, I take Aricept, just 5mg, in the AM. It's an Altzheimer's med, and it's the difference between me being an "Airhead", or, being able to think, retrieve memories, and form new ones, especially forming new "Thoughts", when sometimes otherwise, I know I SHOULD be able to, but, it's such an effort!
( Hear me, it took years of trying different things, possibly until Aricept was available.) If I take 10 mg., I'm a little too "thinky", if you can understand what I mean...

I'm also VERY touchy with caffeine. It IS a STRONG drug! (I'm pretty sure that's why I'm awake now).
A strong cup / glass of hot/iced tea, can really rev me up! (Like, Pete, SHUT UP!)
If concentration, memory retrieval, and the like are a REAL problem for you, you might want to ask your doctor for a sample of Aricept. (If s/he thinks it's right for you, of course).

Be well,

Pete

I feel this is really a big part of the problem
 

Allen, this is really speaking to me, In fact your whole post is, and i appreciate it greatly. I have tried many times to "not take meds and make it" but have failed the pain is too much. Obviously there is a better method . I do believe it is time for me to try a major cut back as you suggest -since my pain with two doses of Opana er 40mg each, and 5 30mg of oxycodone each day for breakthrough- is not controlling the pain.

My breakthough pain is still at a 7 or 8. The pain is debilatating. I know I can not take more- this is already enough for several people.I have asked myself many times "Are the pain meds now causing additional pain now"?

This could be the case for me. I have read alot of articles on this. I know im in a fog, lf my husband is not home i dont function at all.I can't the searing pain sends me to bed to wrap in heated blankets.

Or Im trying to recover from too much activity while my husband was home. I dont know if anyone know what I mean there, "I overdo" when my husband is home to appear as normal as possilbe. I pay a huge price for this . Thank God he is only home a few days, or I wouldnt make it. It takes me days to recover. As you can see I'm conflicted. If I do more the pain is so much worse, but if I do nothing the pain is too bad to do anything any way. Am I recovering or is it the meds?

I am about to loose my insurance Im terrified. Your post has given me courage I'm not sure I am a canidate to be off all meds but I do think its time to see what I can do about reducing my meds. I'm going to start right now. Any tips?Thank you again, Allen , so much, cz

CZ dont try to reduce them without the help of your doctor. Talk to your doctor about your dosage, and your concerns. Your doctor should want to help you without causing anymore pain.

The pain meds do cause more pain. As your dose wears off, your body begins to want more of the drug, and you feel this as pain. I know this sounds weird, but believe me it is true. When I was on the ms contin I was taking a fairly high dose, then taking up to 6 norco a day for breakthrough pain, and still the pain was a 7-8.

Still, I am not trying to talk anyone off their medications. Your pain may be alot more painful than mine will ever be, so please talk to your doctor before trying anything.

I just know that your not losing your mind, and if anyone tries telling you that you are, you tell them that they should try to live with the unbearable pains that you deal with. Your mind is fine :hug:

WOW - I didn't know that you had NO meds for so long. You are a really strong person for making it through that. Kudos to your family also, as I imagine they played a role in supporting you through that tough time.

I have never been prescribed a time release med, like MS contin or oxycontin. My PCP doesn't like writing them because they are so addictive. I did start the Fentanyl patch in mid-July, though, which helped me a lot because it took me through the overnight hours. I take Perc and Methadone for breakthrough, but lately my dosages seem to keep going up, up, up. My head pain seems to be increasing all the time. So I am really interested when it is explained that the meds will INCREASE pain as they become more and more ineffective. I admire your strategy Allen, and think that it might make sense for me, also - the meds don't seem to work anyway. I don't believe I've gotten too brain dead, but I should check with my husband to make sure - he may have a different opinion on that one.

My therapist has talked to me about "mindfulness," and using different breathing techniques to try to work through the pain of my headaches. I KNOW that breathing did NOT work during labor with my babies (who were they trying to kid?!). But it may have merit now and it's as good a time as any to try it.

XOXOXO Sandy

Allen I really admire what you have done too, it must have been very difficult for you to come off the drugs you had been on. You should be very proud of yourself and I'm sure your family is too.

I think there's a lot to be said about this approach. There is a study posted on the RSDSA.org site about this very situation where they found that pain patients who had been on high doses of opiates had significant reductions in their pain levels after they detoxed.
Author: Baron MJ, McDonald PW
Title: Significant pain reduction in chronic pain patients after detoxification from high-dose opioids
Source: J Opioid Manage. 2006;2:5:277-281.

Because of my allergies to many medications I'm on very little. My first line of defence is my Lidocaine infusions; they seem to keep me relatively stable. All I seem to be able to handle orally is daily ibuprofen, 400 mg 3 times a day with food and Tylenols 3.as needed. I hesitate to take a Tylenol 3 but do so if my pain flairs above 5. Failing that if the pain is getting out of control my last line of defence is to take an oxycontin but 5 mg will knock me out so I have to go to bed but it usualy helps calm things down. Breathing and heat application are also big time pain relievers for me.

When I was first diagnosed with this I was put on all the usual drug cocktails and I didn't know if I was coming or going. I have a very close friend who is a physician and when he first learned about my diagnosis he rightfully cautioned me against taking most of the drugs that were being prescribed in such a shot gun approach. I should have listened to him but I always hoped there would be something out there to help me. I’ve never found anything to help with the deep bone pain I experience. Mind you the pamidronate infusion I had did make that subside for a while, only problem was that it caused an explosive motor sound in my head that caused hearing damage and tinnitus, they tell me it’s only been reported in 1 other patient in the world.

Today I went to buy my cane. I realize that the longer I put this off the worse it will be for me because I’ve really thrown out my hip and my back with my bad gait favouring my left foot/leg. I’ve always hesitated to use a cane because I fear being labelled disabled. There we go…it’s that fear thing again. At least I managed to find a fairly snazzy little number that will compliment many outfits :wink:

I’m not having a pity party. No, I know it could and can be much worse and while many of you struggle to just get out of bed each day I can’t tell you enough how much I admire your spirit, enduring courage and kind hearts. I just need to re-frame my thinking about this.

Hi CZ, I can so relate to this comment you made cause I do that too, all the time. I always suck it up to make things as normal as possible and hate to complain. I always end up paying for it big time. My husband and I are living in different cities right now because of his work and I totally crashed emotionally and physically when he first left. I didn't realize how much I over compensate and hide my pain until I was left on my own to just be me and have my own time.

Now that I have my cane I feel a bit relieved in a way. It feels like I’ve been afraid to admit my RSD diagnosis, been in a form of denial I guess.


I hope you are all doing ok tonight.

MsL