Fear and Functionablilty, how to cope?
 

I think that the fear of this dreaded diagnosis is my worst enemy.

Sometimes I'm paralysed into believing that I can't go on, other times I wake up with that fighting spirit that says, "no you're not going to get me, "I'll teach you Mr RSD about who's really in control" only to be knocked down time and time again. It's an ongoing battle for me and frankly I'm getting quite tired of it. I dread the thought of winter rain and snow around the corner. Should I resign myself to this fate or keep fighting? They tried to teach me that "pain is my friend" in the pain management program and I still can't accept that. Pain is no friend of mine and I'm certainly not inviting him to my party. I ignore the pain signals as much as I can until the exhaustion of the spreading throbbing burning deep bone pain screams loud enough that I have to finally listen.

My husband says I have control issues. I laugh at that now, finally accepting that he’s right. But what can I do with that knowledge, it's who I am. How does one change such deeply rooted personality traits? Laughter does make it easier to accept it, but that still doesn't change the facts.

Why do I have to battle like this day in and out? It makes my so tired and vulnerable. How many of you do this? Am I alone in this battle or do any of you also have this struggle?

I could be considered by many as fairly functional as far as RSD goes, although I lot my job 3 years ago and still haven't returned to work. I don't know who in their right mind would hire me with all my quirks and sudden onsets of pain flares and frequent medical appointments. I'm just not the dependable employee type I used to be. Has any one here been successful with inventing your own job through self employed that helps you to manage the daily management of RSD pain?

I need to work again, cause I need to find purpose in my life. I know that I have so much to offer I'm just not sure how to go about getting started. Any suggestions would be welcome.

I'm sorry if I'm rambling here, I just though I should write my true feelings for once instead of hiding behind my "I'm OK facade"

Hoping you are all are in a good space and pain levels are manageable.

MsL

Don't me sorry. I know I can relate and I am sure others too. A few thoughts are you in mental therapy or seeing a psych? Now for the 1st 2 years of this i did not. I had in the past a lot but I was so if you would fix my pain and ohysical health mentally I would be better. Well this was not happening. As time went on I was truly loosing my mind. When I look back I should of been in a psych ward. Now I am not saying this you but me. Anyhow about 6 months ago I went to the psych and got back on mental meds and though my anxiety,depression,etc is still there I am much more rational,calm,and hopeful. It did not take away the physical pain but has helped me cope/accept/and make goals. I think for me I have my bad days and good mentally. Some days I just feel like how can I face the day like the other but I called my mom who motivated me to see the progress and went to a movie. It made me feel better. I understand as I want to work too. I need to feel productive and like a "person" right now my pain level is too high and unknown but I make other goals. So maybe you can. Like sign up for a class,volunteer,make a schedule and do things by that to get into a routine. May I ask though you know that about yourself your husbands statement how did that make you feel? I guess I ask because for the 2 years I was loosing my mind people were telling me that and it really ****** me off. Now I know they were right and wanted the best but I think a lot is how one is approached. Even when docs talk about the mental. I agree this does take a toll that way so suggesting therapy is good but making it seem like therapy will cure the pain is not or that this is in the head. So using your voice and telling people and even doctors how you feel and what can help I think is important. Ok enough of my novel. Hang in there and you have to hold to hope.

MsL, you put this all so well, the battle continues
 

I too have this on going question , debate raging within me. is that anything i can do to make myself valuable again? I speaking in terms of the large annual income i have lost , my company my love of work, of being creative,marketing , etc. I have this conversation frequently with my sister, as early as last week, I was saying , If someone would just hire me to brand their product, provide an at home assitant who could do the typing , put my thoughts on paper, clean them up as I have lost all vocabulary and organizational skills, help me dress, clean up the house, drive me and if these people would allow me to work just for an hour or two on the days I could , Im not kidding I actually had this conversation and have started it many times. My sister sits ,listens patiently says a few uhums and then I noticed her eyes were wet, and then the ricucouslyness of it all hit me yet again. I think that says it all. God love my sister for listening. We both then had a good cry. Professionally, I was my sisters hero, she looked up to me. She is a successful banker now, she used to call me for advice on career moves, not anymore. Its all so depressing.I know I have so much to be thankful for, yes my husband loves me, but he loves a totally different person he cant help it, there is pity in there, it kills me.
So MsL I totally relate, that is why I am seriously considering the pain pump, even though Dr. S told me I can never have surgery,if there is a chance I coud have part of my life back I have to try. cz

Well you two have summed up my battle with RSD and myself quite nicely. I think the hardest thing for me was that notion that life as I had known it was now history, and there was nothing, and I mean nothing I could do about it.

It put me in a 3 year depression where I didnt want to see anyone at all, and when I did it was as if I was not there. All I could think about was how I was going to get myself back into the work world, and recoup all that this RSD had taken from me. The more I tried, the more it knocked me back down.

At the same time I found these forums, and was making some friends that I know to be my RSD family because we share such a common bond, such as what we are talking about now. As I learned about others struggles, mine seemed not as bad, maybe even childs play compared to some. I began to try and put my struggle into perspective, and to force myself to face the reality that this is now my life. Pain is now a part of me as much as my arm, or my leg, or that image in the mirror I look at every day, and I have to get used to the idea of dealing with it daily.

I still yearn for the old me that had the expensive sports cars, big office, and the 20 more years left to advance in an industry that could make your wildest dreams come true. Only now I look back in pride, because I made it at least. Nobody can take away what I did accomplish, and because of those successes, and hard work. I can beat this RSD down, and not let it steal my joy for today.

Sure I need medication to help me with this fight, and sometimes it knocks me a good one. Puts me down for a few days, but I bounce right back! I come back swinging! It will not keep me down. There is really too much to do. There are grand kids, sunsets, sons and daughters, husbands and wifes, places to see, restaurants I havent tried yet, and the list goes on.

Last summer I took my power chair on the train, and we travel up to Oregon, and had a blast! This summer we put the power chair in the van and went to coast about 6 times, and had a blast! Did RSD try to take the fun out of it? OH you can bet it did! But it couldnt beat me down, sure it hurt like heck, but when does it not? It hurts everyday, just some worse than others.

Maybe you will be the one to beat it back and get that job back! Just dont let it get you down. Life is too short for us to let this dumb RSD play with our minds like that.

So common!!
 

We are all on the same page.. the feeling of dispair and helplessness and hopelessness... times 50 some days..other days I feel I can move mountains and smile while doing it...We are all living with a very scarey, unpredictable illness.. I was told once that I have it for the good of others..to set an example.. for the good of others... I am okay with that except sometimes I am overwhelmed with saddness but then those are the times I search for a positive and thank god it is me suffering as I would never want to see anyone I love .. my family or friends go thru this.. anyone...ever! This was a wonderful topic.. well written!!:grouphug:

Plz.. keep smilin..

You guys are my inspiration. My injury was almost 3 yrs ago, but my first diagnosis was just 15 mths ago, and I left my job for a LOA just 3 mths ago. I'm a newbie at this. I often turn to you all for support and advice. Thanks for always being here. I don't know if I will ever adjust, I still intend in my mind to get better.

I go to NYC this Friday for a ketamine evaluation. I have no idea what I will do if I can't get it because the doctor doesn't believe I have RSD (I only have about a 50% success rate with that), or if it doesn't work. I don't have a Plan B. I finally stopped crying about a month ago. But I don't think the sadness will ever completely go away. I also sent an application to Dr. Getson in Marlton NJ, but it has been more than a few weeks and he has not responded. Bummer. My evaluation with Dr. S is in June 2010.

My therapist asked me last week if I ever get mad about my fate instead of sad. The answer is not really. I don't know why I'm not mad about it. The only time I've ever felt angry is when the WC insurance company interferes with my care.

I agree with Keep Smilin - I am profoundly relieved that I am the one in my family that have RSD. I wouldn't be able to stand it if it was my husband or one of my kids that was suffering like this. I'd much rather it be me.

I am scared to death of the upcoming winter. Just wanted to share that with you all. Has anyone else said that yet? Last year was my first winter with RSD. If the cold wind blew on my head I would wake up vomiting with head pain in the morning. Does anyone else have RSD in their upper back, cervical spine or the occipital area of their head? My RSD spread up from my shoulder (location of original injury), instead of down to my hand (or extremity), which is what most docs are accustomed to seeing. I feel like a freak because my RSD is so very unusual. And most docs haven't seen my kind of RSD before and don't know what to make of it. They want to see a swollen, discolored extremity in order to make a diagnosis - hence, my dismal 50% diagnosis rate.

Thanks for a great thread, MsL. I think many of us appreciate talking about the psychological aspects of RSD because of the monumental toll it has taken on our lives. No one else can quite appreciate how things have changed for us - it really is devastating. Not just because we are in so much pain, but because our livelihoods and sense of purpose have been taken away also. I never expected to "retire" at the age of 48.

XOXOX Sandy

wow! r we all in this together, or what?? i'm soo thkful that if i had 2 fall, it was at work! i've really been taken care of! right out of the cast, i was sent 2 OT, a hand specialist who knows RSD! i was sent 2 a medical psychol. who knows RSD! of course, it took W.C. months 2 approve my PM dr! and i have a neurologist, as i also have epilepsy.

i have absolutely been in those "down, depressed" states..... some days r good & some suck! some days i can drive 2 town fine, some days i drive 2 town & call (crying) my husband who has 2 come & get me. haven't had any ganglion blocks, no scs, not even narcotics! i do take lots of seizure meds, neurontin 1800mg & lexapro. i try 2 stay calm - as all of u know, stress sends me 2 the moon! we built a new hm in the country; it's my haven.....

don't know what's gonna happen w/my job. i'm still employed, at home & receiving my salary. verrrrrry blessed in many ways - we must think of the blessings & positives! 2 all of u - thank u 4 ur support, ur knowledge & encouragement! God is good! :)

I think if we set our words to music we would be a magnificent chorus of understanding and commond bond...

Every post to this thread echoes my thoughts, isolation and conflict.
I have to redefine myself.. the person I was before RSD reflected my personality, my interests, and plans...
The loss of mobility beyond 100 yards..has been huge..
When I lose calmness, I worry about the future, about spread, about finances..about coping with my responsibilities...and my 97 year old mother that I oversee...

Fear of making plans.....pain level is so unpredictable..
I have to take Saturday classes for 2 months in order to keep an adult education teaching credential current..I've never used it except as a substitute for adult evening classes (pre-RSD)
I am afraid to commit to the classes, (attendance to each class is mandatory) because I fear I will be too exhausted to go on Saturday after the work week and/or will be in too much pain...

I've decided to commit to the classes(not refundable after attending the first session:() because maybe I'll get better and I'll be able to use the credential in the future.. ..also I simply want to TRY...
I keep thinking about the adage that "we don't regret what we did in our lives...it's what we didn't try to do"....so I've commited to take the classes which begin this Saturday..I am so grateful to have the mobility scooter..otherwise I couldn't do it..

Ali :hug:has really inspired through her posts about her plans for college and her determination..she is such a wonderful young person!! so kind, compassionate and full of perseverence....she amazes me...I am beyond retirement age, but Ali's spirit is an enormous inspiraton to me...

Most helpful has been trying to learn to harness my mind..through books, meditation,
and a course called "Mindfully Based Stress Reduction" developed by Jon Kabat -Zinn...also a C.D. called "Breakthrough Pain" by Shinzen Young...I can't convey how helpful both of these have been......

AllenTGamer..your penchant for adventure despite your challenges is uplifting!!! Gotta love those road trips!! despite the pain and everything else..

All of you are in my thoughts daily..and your honesty about what's going on in your lives and thoughts and heart quell the RSD loneliness..
Hope4thebest xoxox

Im not sure if anyone else has said that, but I am right with ya! Winter really is the worst! I dread the coming of winter, and look forward to spring all winter long. So tryin to squeeze every drop out of these last days of warm we have left LOL!!

This past Saturday I attended a dear friends birthday party, he turned 70 years old! That is a huge milestone for someone his size, plus he also suffers from chronic pain (I think it might be RSD) in his legs after a car accident a few years ago. We had time before his party to talk about his power scooter, and how he uses it to get him to and from the planes.

He likes to travel all over the world, and he hasnt slowed down a bit! I envy him in that respect because I love to travel too. It would be great to be a sticker on one of his bags LOL!

Here is a couple of pictures, one with my mom, Richard, my wife and myself. He played in Happy Gilmore, can you guess who he is?

Dear MsL -

I've been mulling this one over for a while. Then the cadence hit me, as in "What do you think of your blue eyed boy now . . . ."

Then too the answer may be implicit in the title of your thread. As in, take two Pema Chödröns and call me in the morning. Seriously, on those wet, cold and dark winter days, I can think of nothing better than "The Wisdom of No Escape," "When Things Fall Apart" or "The Places that Scare You." I've forgotten which of them it is, but as I was reading it, I kept thing that she sounded a lot like Sartre. And then how did she close, but with a quote from the man, something to the effect that the only choice was whether to go to the gas chambers as slaves or free men.

It is in the act of carrying on that we show that we are free. Now, carrying on doesn't have to mean gainful employment, if you're not strong enough for it. I t may be just be following your muse. But for what it's worth, for me, the key (of which I must often be reminded) is to merge into the act of just doing, in a focussed way, whatever it may be. Sort of like the pleasure Ivan Denisovich takes from just rolling a cigarette at the end of his day.*

Mike

*A. Solzhenitsyn (1962).

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

You all are soooo cool! We are so much in the same boat LOL. I read everyone's posts and could have written almost every line when it comes to pain, paranoid feelings, anxieties, etc LOL!!

I bet it is the same when you all read these too. :grouphug:

One of the things I cant stress enough is dont mess around with your pain medication dosages. Like taking less without talking with your doctor. The withdrawals are not fun, and I wouldnt want anyone to go through any discomfort they dont have to. It took me 3 months before I even felt anything I could call normal, and the first month was something that I could only compare to a type of hellish near death experience. So please make sure you talk to your docs, they can work with you making it withdrawal free if that is your goal.

I think everyone will find their own path to dealing with this pain we call RSD, and medication has it's place. So again im not trying to talk anyone out of their pain meds. What happened to me was something God had planned for me. He knew I could handle it, otherwise it would have been different.....I think LOL. I do know I came out of this stronger than I was before, and with a sense of purpose like never before.

With something to share with my RSD family. He knows where we are, and he is right there with you. Did you read what I said...He IS right there with you. He didnt heal me, he gave me a peace in knowing he is right here making a way.

One of the things that work for me, imahotep uses, and it works so well. I call it pain distraction LOL
Plus there is this one nagging thing we all share....

I have a suggestion :)

Since we all are on the same page, and it seems we all have some good talent. Plus we all know our limitations LOL! We should look at putting together an online biz.
Most groups come together to organize some type of awarness group. Well thats all cool and everything, but we could use our disabilities as a real marketing tool. All we need to do is find what biz. :p

MsL, this so interesting
 

MsL, this is so interesting, Im glad you are using your cane, alot can happen to the other side of your body by postponement. MsL, your current situaltion affords me the opportunity to ask some questions about mine, I hope you dont mine.This was reversed a bit for me and with my wheelchair, I have to use the wheel chair to go anywhere that requires walking or standing for over 20 minutes or I can not go. My husband would keep saying do you really need your chair?/ over and over , eventually I just didnt go anywhere, My world with my husband has become very small. Different story with my sisters.
We went through this with the cane too,"do you really have to use that". The reason Im sharing all of this is because you too choose to work to be as normal as possible around your husband. I realize your situaltion may be completely different. But my question is have you found you have less pain now that you have the opportunity or situation to be alone and not need to do that? The reason I ask is because after a few days of trying to be normal when my husband is home I often think I wish could just live alone. I feel my acting normal creates so much additional pain for me that its almost intolerabe - Actually I know it does as I'm in bed the whole time my husband is gone recovering. Unless he is gone for two weeks, then by the second week my pain is better because i go at my own speed. SO basically I guess Im trying to find out, is the grass greenier in terms of pain on the other side? thank you so much. cz

Brillant Idea Allen
 

Allen this is brillant! I'm thinking:) cz

I just want to say one thing about this, and, I'm sure it's not your situation. It just brought this memory to mind.
Both of my wives knew, but the 2nd, actually had it in her to tell me, very calmly, but for certain in fighting words, "I Can Control You, With Your Pain".

I'm so happy about my divorce.(My sin, was I couldn't love someone who treated me that way). I'm not happy that I might need to give her my entire life, and what I inherited, from my parents entire lives. We all worked together, and Pfffft. It's gone!
(again, Allen knows.)

pete

Hi Everyone,
You'll probably laugh at this but there are still days that I swear I am going to beat this RSD and be all better one day. I've had other minor illnesses and have always rebounded. My neurologist told me I have to accept the fact that RSD is here to stay. My daughter and many of the friends on this site have told me I need to talk to someone about it. I have been searching but can't find anyone who is familiar with RSD and takes ins. The one Dr who my neurologist reccommended is a physciatrist and wants $450 a session and his office told me he really just sees you one time for an evaluation (medication prescribed) and then it is $125 for 15 mins. for follow-ups. Not what I'm looking for. I am going to keep searching.
I will say that the RSD seems to be getting much worse. I do still work and to tell you the truth I have to. I live in fear now of losing my ability to work. I don't know how we would be able to keep everything we have worked for or even pay our bills.
I do feel like it is headed that way. Well enough complaining. Every now and then I go through these really down times then I pick myself back up again and trudge on.
Hope everyone has a good (low pain) weekend.
Hopeful

Hi Cz,

It sounds like your husband may have a hard time accepting the diagnosis of your RSD and how it’s affecting your life. It sounds like he’s concerned for you and, probably quite scared too. I don’t know if that’s your situation but men often don’t know how to express those emotions.

I think we often forget just how difficult it can be for our spouses to have to watch us go through what we do, it makes them feel helpless. I'm very fortunate that my hubby supports me as he does and that he encourages me to maintain as normal a life as possible, he also is very understanding and encourages me to rest when it’s clear I’m doing too much.. I think that's healthy for me. After speaking with Dr. Rohr in Germany for 2 hours he has a very deep understanding of what exactly RSD means for me, for him and for our future. There are times when we are walking hand in hand and my pain starts to slow me down, I know he feels my pain and it hurts him too, just in a different way. We do need to talk about it from time to time. I was afraid to tell him I decided to get the cane but when I did he just told me that he hoped I would feel better soon and that it would help relieve the pain.

Since he’s been gone I find it is very hard to do many of the things around the house that he would just do without me even having to ask him. I married a man who happens to have an A type personality, he is focused driven and very active. I miss him very very much.

Any pressure to live as normal as possible really comes from me trying to keep up with him and the fear that if I don’t he will leave me. That fear by the way is totally unfounded and merely a deep rooted insecurity of mine left over from a very dysfunctional family and childhood. I came out of that as a people pleaser; which was very evident during a recent visit of a very close friend who brought her 90 year old mother and husband. The visit was very challenging for me and my pain shot through the roof. There were some very difficult family dynamics between them and they were putting me right square in the middle. It was stressful needless to say. At the end of the visit we were chatting about just how difficult it was for me to entertain now. And my friend said you don’t have to do all that stuff just for us! I replied by stating it’s the way I am, if someone comes to my house I feel obliged to make them feel comfortable, feed them, make everything perfect. I’m the same way with my husband, so in a way I have a bit of a break right now. I can't imagine what it must be like for those of you that have children to care for.

Is my pain any better now that he is away than when he is here? No not really, it still boils down to daily management of my activities and stress. I can be my own worse enemy.

The bottom line is that I put this stress on myself and I pretend things are normal with everyone I meet. Until now I’ve had an invisible disability!

If my friends who know what I’ve been through ask me about my foot & or health, I always underplay the realities of what it’s like to live with this. I always show the bright side because I don’t want people to worry or feel bad.

The grass isn’t greener on the other side; the RSD pain still has a mind of its own. It’s just up to me how I manifest my emotions around all that.

I hope you can talk to your husband about how his coming home affects your pain levels so you can take the pressure of yourself. I’m not so good at this but I am getting better. I’m learning how to say NO and not feel quilty about it. When I can do that it feels great.


I hope your doing well tonight.

MsL

Hi Hopeful.

I love your optimism and honesty because there are days that I feel the same way exactly.

I'm not in therapy either for the exact same reason it's just too bloody expensive. I'd love to find a professional to talk to about this but it's not covered under my insurance here.

Thanks for sharing.

MsL

Great Suggestion Allen
 

Have any ideas about a the type of business that could work for people like us? I'll put my thinking cap on too.

MsL

Pete, thank you
 

Pete, thank you for sharing this very personal and powerful part of your life. I appreciate it.

I hope this is correct where you are, but spouses get nothing given to you by your parents, nothing.If you had it before your marriage and/or if it was gifted to you during your marriage, they have no right to it. that is the law in lforida. I really hope that applies to where you are. thank you again Pete, cz

Hopeful I do the same thing, and that was one of the things that I had a hard time dealing with because of the reality. It always came back to that dumb RSD making it difficult for me to do normal everyday things, how in the world was I going to function at a working pace?

Wasnt going to happen. One thing you did find though......the cheapest therapy in the world! A bunch of people that understand, and will listen, offer their shoulders, and be there anytime you need. :grouphug:

Wow CZ that is interesting, I think that is the law here in California too. I sure hope that is an angle you can take Pete. You are one of the strong ones here, and it is from over coming, but it would be nice to see you get some things that are rightfully yours back.

I do have some ideas on a online biz. Since we are all fairly versed in medical gadgets, we could sell all things RSD/chronic pain and everything that fits with that model. We could use the fact that we are all disabled with RSD as a marketing tool. We could tell our stories to the news about each of us, and how we came to start this biz.

It would do a few things right off the bat.
1. Create awareness of our business
2. Creater awareness of RSD/chronic pain
3.Give us all something to do LOL!

But im open for suggestions too, heck with all the brains in here you never know what we might come up with!

I've been thinking of trying an on-line business as well. I think I'd feel a lot better if I were just doiing something to earn some money and feel more useful. My biggest fear is that it would be highly successfull and I'd have to hire help and it would get stressful. Then, of course, I'd lose my income since I'm doing so well and the business would go belly up.

Everything just seems to come back to fear for me.

I just might really do it one of these days since I'm sure it would be fun and I could use a lot more fun.

Hi MsL,
I saw that you wrote that you have pamidronate infusions. What are they. I am looking for options to discuss with my neurologist when I have my appt in Oct. :confused:
Hope you are having a good day.
hopeful

It's not a drug to play with, primarily used for bone cancer patients. It is a bisphoshonate drug which is under investigation for use in RSD patients. My doctor stopped using it after my reaction and there is no clear evidence that it works for RSD.

Like I said I had a very severe allergic reaction to it, more than the flu like symptoms that's described in the attached document describing it. http://www.cancercare.on.ca/common/p...x?fileId=10683 I Know there is a study out there about it's affects on RSD patients but I can't find it right now.

I lost my hearing partially in one ear, the blood vessels in my opposite eye all burst and I have a permanent ringing noise, sometimes loud, in my head that makes it difficult for me to hear especially when there is any type of background noise. That being said I did have a temporary reprieve from the deep bone pain I initially complained about. Was it worth it NO! I'm not able to take any other drug in that class, I was taken off all the osteoporosis drugs and can't try any new ones. Not good news for an RSD patient who isn't even yet past menopause.

It was the second infusion that took me over the edge and landed me back in emergency at the same hospital I received the infusions. I ultimately had to resort to a doing a "sit in" at the waiting room of the ENT clinic insisting that the head of the department see me so I could get some help. The emerg department had released me with a shrug of their 3rd year resident shoulders claiming it was merely a migraine. I suffer from migraines so I knew that there was much more to it than just that and I was really sick and scared.

I did get help ultimately, including oral steroid, steroids injected directly into my ear drum and HBOT. The loud explosive motor sound is now down to a low buzzing noise that no longer makes me want to cut my ear off. I now know why Van Gogh did that, it had nothing to do with him being crazy, it's said that he suffered severe tinnitus too and it is that relentless sound that drives one crazy. I'm so grateful it has subsided to a dull roar.

I wish you well with your up coming appointment, please let us all know how it goes for you. I just can't recommend this particular drug.

MsL

LOL I have the same fears!! I keep telling myself that I could grow to the point where I would only manage people, and from there it would be a cake walk.

Then the casino memories come back with all 250 employees....err babies, needing their pampers changed everyday LOL!! Well it wasnt that bad, but it was on some days. Then I think all I have to do is find one good manager to over see everything, and he would answer to the board/owner.

Plus with todays technology I could look at every business detail as it was being done with just a key stroke, or even on a cell phone for that matter.
So it wouldnt really be that bad I dont think. It would be nice to make enough money for everyone to take a nice vacation to your place! :winky:

Zometa
 

Hi folks. I for one had an entirely positive experience with a newer cognate of pamidromate called Zometa. Specifically, it has been the best (and only) treatment for the "deep bone crushing pain" in my ankles. Taken in periodic infusions in my pm doctor's office, that specific pain has gone 40% (or less) of what it once was. That said, it hasn't done anything to speak of for the constricting pain in my ankles, the burning pain and tightness in my feet, the sense that my toes have been worked over by hammers or crampping thought my legs and, sometimes, body. But, the deep bone crushing pain was the worst thing I had going, bar none.

Zometa (zoledronic acid) here's a link to the current U.S. prescribing information sheet: http://www.pharma.us.novartis.com/pr...pdf/Zometa.pdf The allegergic reaction which Mslday mentions appears may be referenced at Sec. 6.2 of Zometa's prescribing information sheet, but comparing it to the sheet she posted on Pamidromate - as well as not only my experience but what I understand that of my treating physician's to have been as well - I would have to say that if Zometa is its cousin, it is far more benign. That said, Zometa should never be used be anyone in need of "significant" dental work where it may lead to "jaw necrosis." Accordingly, most good pm docs require pre-clearance from a dentist. Also, bear in mind that because of a risk of renal toxicity, as measured by increases in serum creatinine (Section 6.1) periodic and very basic metabolic blood panels are required while you're using the drug: your blood is tested before every infusion. (Another difference between Zometa and pamidromates, so far as I understand it, is that the Zometa can be infused through an iv line in 15 minutes as opposed to the pamidromates' 4 hours.)

That said, pamidromates in general have been shown for some time to provide relief from CRPS. See, "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5:276-280, full text at http://www.rsds.org/2/library/articl...e_Robinson.pdf I suspect this is the article Mslday had in mind.

Unfortunately, in the U.S., Zometa's FDA approved use, to prevent the uptake of bone material into the bloodstream, primarily associated with multiple meloma, it's dosed at approx. 5 ml. On the other hand, for CRPS it's given at I believe 60 ml. This has been used of late as the basis for my insurance co. to deny reeimbusement for it's use (at approx. $900 every six months) after three years of no questions asked coverage. The matter is currently on appeal, so we shall see what happens.

Finally - and I've posted this before but it's worth repeating - for a recent "review" article on the use of Biphosphonates - the broad chemical name for the group of drugs - which has the feel of a "work for hire" (and because it's published in Europe there are no manditory disclosures of "competing interests") see, "Biphosphonates for the therapy of complex regional pain syndrome I—Systematic review," Brunner F, Schmid A, Kissling R, Held U, Bachmann LM, Eur J Pain 2009;13:17-21, full text at http://www.rsds.org/2/library/articl...d_Kissling.pdf. The article goes so far as to question the use of this therapy because it's not in the "current" (1998) guide to consensus practice that predates all but one of the four studies that have found this class of drugs useful, and then suggests that one should never rely on a "mono-therapy" in the treatment of CRPS when the Robinson article - above - makes just that same point!

For what it's worth.

Mike

Hi,
Thanks for the info. I don't think I will ask him about that treatment. It doesn't sound like something I want to chance.The last thing I want is another aliment. Did the HBOT work for you. I have seen people talk about that on this site. I think some people get relief from it. Sometimes I feel so desperate I would give anything a try but I know that is not the right thing to do.
Good for you sticking up for yourself like that with the ENT! That takes a lot of guts!:)
Hopeful

Hi Hopeful,

I can't really say that it did or didn't help. There were so many things going on with my body at that time and the primary reason I was given the opportunity to do the HBOT was because of the severe tinnitus caused from the pamidronate. I was also put on the oral steroids. I frequently felt deep bone pain in my rsd leg as we were descending in the chamber and I would suffer vertigo after the dives were finished, probably something to do with the inner ear damage caused by the pamidronate. After the 20 sessions were said and done everything with my RSD did seem to calm down, but it was during the summer time and warmer weather does seem to help me too. It was a great summer, one I'll always remember because it was the year I got married.

The other question that needs to be answered but one that I can't is did the pamidronate do what it was supposed to do, which was meant to help relieve me from the deep bone pain.

Like I said I had a good reprieve that summer and sailed through my wedding and honeymoon in fairly good shape.

I would do the HBOT again if I had the opportunity.

Personally I think HBOT is worth while to see if its right for you.

Wishing you well.

MsL

Sandy...

I too have a lot of the same problems you have with have the doctors saying you don't have RSD and then many others saying I do. I actually saw Dr. Getson about 2 weeks ago. I had a Thermogram done. Have you had one of those? I was amazed at how clear cut the results were and feel now that any Dr. that says I do not have RSD is a quack. Dr. Getson, told me that my RSD in my leg is more than obvious...which I and many other doctors have seen...but many put in their reports that my leg has no evidence of RSD. Now I feel validated. I knew what was wrong with me...but I have a physical test I can walk in an office with in my hand and say..."here is my thermogram I have RSD what are we going to do about it." I was taken back a little when he told me that what I thought was a pinched nerve in my neck from the accident that flared my leg again is not a pinched nerve but new RSD...not only was I a little surprised, but very surpised that the Thermogram his office does is so intricate that he could tell that.

He was so nice and kind, I said I will probably be back to him in the future for ketamine infusion therapy, but for now to stay the course in my treatment, and possibly consider a SCS...he was right in line with my other doctors, that I have who I finally feel comfortable with. Let me know if you need any names or any help. Keep your head up!

Hi there,

Thanks so much for your reply. Getson's office finally called me 2 days ago, I have an appointment with him on Dec 3rd. His website describes his Thermographic Diagnostic Imaging. We have nothing like it to my knowledge in Rhode Island. I am really looking forward to meeting him and investigating his ketamine infusion protocol, because his office is just a mile away from one of my brothers, and an hour from my parents, and they could help my husband take care of me. His protocol sounds intense - 10 day outpatient, followed by 2 days a week for a month to six weeks, followed by 2 days a month for a year. And his office WILL work with workers comp insurance companies.

My other option for ketamine right now is NYC, where hotel rooms are going to be very expensive and which is far away from both my husband's family and mine.

So you liked him a lot? That's great. And thanks again for taking the time to write. I truly appreciate it.

XOXOX Sandy

Thanks, CZ,
I have quite a lot of fighting to do, lawyers are expensive, and court is SO STRESSFUL!
I Keep Prayin'!

Thanks

Pete