Is there light at the end of this tunnel??
 

:confused:

I guess I need to tell my story, what I remember of it and maybe that will help you understand me.

I had Carpal Tunnel surgey Feb 09. My recovery to say the least did not go as planned. After 8 weeks on pain meds and still no relief, I was placed with an Occupational therapist. I was in terrible pain which was blamed on scar tissue squeezing my median nerve, causing the blotchiness, swelling etc.

Everytime the therapist touched my hand and forearm I wanted to go through the roof. I was told though that it was just part of the scar tissue trying to break up and it would eventually go away.

At the beginning of Sept. I walked in to OT and I said the words that changed everything!!! "You know, I've been trying to describe my pain to my family and the only thing that I can come up with is, IT FEELS LIKE MY HAND IS SITTING ON A STOVE THAT IS TURNED ON HIGH!" Why oh why hadn't I said this before??? My OT sprung into action like she was fighting evil!

With-in two days she had talked to the doctor that performed my surgery, talked to a CRPS specialist (that happened to be her teacher) and talked to someone about a tens unit.

My OT said she thought I had it early on but she could not diagnose me however, once I made the statement about my hand and the stove she knew there was turning back for me and what she was doing was not going to help me.

After another surgery to release trigger thumb, many many stellate ganglion blocks, OT excercises, neurotin, cymbalta, amitriptyline, oxycodone, ketamine cream, tens unit and my glove, I sit here today with little relief! WHY?

Do we get better? Are we able to ever function without pain? Or do we try our best to tolerate the pain for what little time we can? I have all these procedures done and get a little relief for a few days, when does remission happen? Why am I going through all these shots if there is NO CURE? Why do people look at me like OH MY GOSH, you're not beter yet? How do I make people understand when I DON'T???

I wish I had an answer for you that's better. Few of us go into remission that's permanent,
and, for most of us, the rsd/crps can spread, and eventually go full body. I've had rsd, since '83, and for the first several years, it was limited to my spine, between my shoulders, and up my neck, causing severe headaches and arm pain, which was also diagnosed as Thoracic Outlet syndrome. That's all still there, but the RSD has spread to full body, and all that can be done (for me) so far, is "Manage" this bear the best I can.

We've got to keep moving, (especially where the RSD is).
Find what meds work the best, (I've been on a "cocktail" similar to yours, but I take methadone as the main pain killer.)
You must also recognize the psychological effects, and it's important that at least one of your doctors is a psych, of some sort, specializing in pain. At least until you've learned how to cope.

I hope someone here can give you some positive reinforcement. I'm sorry to say that for me, and most that I know, it continues to spread and rather than use the word "worsen", I'll say "change"....

Go to www.rsdsa.org, and if you can join that site and get their newsletter, and some brochures. This will assist you in explaining both to yourself, and other's what's going on.
You've damaged a nerve. Consider nerves to be like an electrical system with circuits and wires, and your brain as the controller. The nerve damage is a short circuit, which can spread around, and affect the controller (the brain). The end result is pain, changes in temperature, your autonomous nervous system "doesn't know what to do". For example, A cool breeze may cross you, and instead of your pores constricting, you may perspire. The opposite of what should happen. This may or may happen, depending on when it gets to the 'control' center. Your hand, or affected site, may become mottled and clammy, even sweaty. Odd perspiration and hair growth or loss may occur.

Everyone is different. Keep the Faith, and be sure you have the best doctors!

Wishing you the best.


Pete
asb

Asb-

:hug: Thanks for taking time to respond. My family has become less sympathetic to my CRPS I feel. My doctor had instructed me to use my arm as much as possible because he doesn't want muscle waste. I have been trying to not complain, do as much as possible etc. But with that comes "you must be better!" If they only knew that once they are gone, I am in the bed crying my eyes out because I have over done it. My husband argues the syndrome/disease issue. No one understands why nothing has fixed me, neither do I.

I was hoping by finding this site I would find answers but seeing that you are the only one to respond I am guessing everyone is pretty much in the same boat and don't have any answers.

I can understand your frustration cause like you have tried many things to be in very high pain still. I do know a girl who tried many procedures and meds for this and was in a horrible place with her rsd but then finally had a procedure that worked for her and is doing very well living life again. Everyone is different in response so what may work for you may not for me and that makes it even harder to treat. As for family I have some who are very unsupportive and actually blame me for this and I have some who do care so I try to focus on the ones who do care. Also to get support from others like through here. If you want an email buddy I am here. Could you find info on the internet to educate your family? Is your current doc who treats you have good knowledge of rsd? Could you go for another opinion? My last pain doc as I have seen a few I feel I made the most progress with because he looked outside the box. Sending thoughts and I wish I had more to offer. Try to hold to hope.

Oh gatorsmomma... I am sorryfor your RSD.. you will get more responses soon..We're a close nit group/family here who care a bunch about eachother...RSD is a bear...You will get many good tips and advice here with us..There is no cure, I am sorry and not everyone responds to the same intervention the same either..I for one can not take any pain meds so I am cold turkey RSD for 3 years, full body/internal..beginning due to a knee operation.. Never use cold anything on the affected area..be sure to read a ton and become educated...here and the RSDSA website..Due to it's rarity we seem to lack support by the Dr.s and ins. coverage for help but we try to help eachother thru this miserible illness... It is very important you have a knowledgeable anestesia or Pain management doctor..and if caught early enough it is best for interventions to help you... AND plz. get a conselor as you really need someone to speak with..You and your family as well as friends are all going thru this together but it affects you all differently..Many phases to go thru on a daily basis..Please..try to stay positive and lean on us..ask questions..swing..kick and most of all hold hope in your heart as life is still precious just our priorities get stacked a bit different.....

Nice to have you here with us but very sad you have RSD....

hugz, Kathy:grouphug:

Thank you Daniella and Kathy,

I truly appreciate your honesty. Today for me has been a bad day and I am sorry if messages bring anyone down.

I love my PM doctor. I have been to what I considered the best at Vanderbilt University and they did not help me like he has. He has at least provided some relief.

Yesterday we tried something new, peripheral nerve blocks. I had 3 injections near and at the elbow, into the median, ulnar and radial. My hand and forearm were numb for the most part of the day (which was nice), then about 8 pm I noticed that I had not had any spasms in my hand. I was very excited that finally something was working. I was wrong. I woke up at midnight with pain like before I even started the meds. I don't know what triggered it to be this bad again. Was it because the doctor had to touch my arm? Anyway, I should have never gotten my hopes up, I should know better by now.

I read this study done on RSD and peripheral nerve blocks and the results seemed so great on everyone. If only!

http://www.rsds.org/2/library/articl...Kanji_2010.pdf

Link to the study on the blocks.

There is quite a bit of information on this website.

Anyone newly diagnosed (which I'd categorize you as) with RSD should:


1. Be proactive about treatment, but do your research first.
2. Be optimistic that remission is a possibility, but accept that there is no set timetable for when that remission will occur.
3. Seek mental health resources for you and your husband.

Hi! I am so happy to meet you but so sad to meet you with RSD. This is really a life-changing disease and it is difficult to explain it to others. There is a good thread going that occurred earlier this year with some really good answers. My family does not understand but I have gotten my adult kids to read some of the posts on this board after I force fed them this link and guilted them into reading some of the posts. I too would urge you to find a good psychologist to work with, mine has really helped me a lot, and no they are not only there for "crazy people", they are there to help people like us who have difficult problems. I have had many therapies, injections and many surgeries on my arm(before the RSD diagnosis). I have atrophy in my left forearm and have to wear a wrist brace constantly- it is my "fashion" accessory. As to if we get better, we get different. I think that maybe God had a different plan for me than what I had for myself. I have learned to appreciate the good days, to cope through the bad days, and sleep through the horrific ones! Meanwhile, since I have been unable to work, I have almost attained my college degree, spent more time with my parents and kids, welcomed God more deeply into my life and become a more compassionate person. I am glad you have found this site, there are many wonderful angels here that will help you through this process. Your friend, Lisa

Thanks Lisa,

It is funny you mention "God's plan" as that is how I cope with my pain. My pain has definately made me more sympathetic to my mothers RA. My pain has allowed me to be home when my kids get off of the bus (even if I am in a fog, they are happy).

I have thought about getting help. I felt crazy before I was diagnosed, now I just feel hopeless at times and today was one of those days. I know there are things to be grateful for they just get lost in the pain sometimes. :hug:

Longer Reply
 

Did you undergo a stellate ganglion block at the time of your second surgery? Did the second surgery help, make you worse, or change nothing?

Those meds are a small list of the many combos out there. Each of which should only be introduced one at a time, after a reasonable trial period. There is no magic formula.

What does little relief mean? What is your current pain scale on a regular day with your current meds? What was it without any medication?

What glove?

The WHY question. This a complex neurlogical disorder that has no simple fix.
If you and your family haven't accepted that this is a life altering syndrome as severe and disabling as, let's say, cancer, than that is where you need to start.

Some go into remission. That is why we undergo stellate ganglion blocks. There is that hope always early on. It is also a diagnostic tool to confirm RSD. It gives you periods to recharge without pain, or at least less pain.

At some point you'll make a decision that the effort for a certain procedure, or side effects of a medication, isn't worth the relief you receive. We all have to figure out what helps by personal trial and error.

There is no surefire cure as of today.

You can certainly learn strategies to cope with RSD. I'd suggest starting with the Stickies. :)

Just wanted to note, that using a brace on a RSD effected limb is generally considered a bad thing...

Thanks Lit Love,

1) The trigger thumb was prior to Dx of RSD but after symptoms.

2) I have taken different meds and we have had to narrow it down to what I am currently on due to side effects.

3) On a regular day using all things I have to control pain, it is 6-7.
on a good day it is a 5-6, without meds prior to blocks a def 10, without meds now range from 8 to 10 ( and I only know this because I couldn't afford to refill my meds, which I only let happen once & will never torture myself like that again!)

4) I have a glove that my OT ordered for me, it is a full length ISOTONER THERAPY GLOVE, it protects me from wind, if my kids breathe on my arm etc.

5) I have NOT accepted what it has done to me mentally and physically, I am starting to accept that it is out of my hands, that there is no cure and remission is what I must pray for daily.

I am grateful for finding this site, it is nice to have people to talk to. I am going to take what I learn and hopefully help my family understand better.

Regarding the glove, how many hours a day/week do you wear this?

Everytime I go outside. If I am reading to my kids and at night at bedtime in case hubby moves the covers around.

I do desentization daily and it has helped me be able to touch certain things. Water is still bothersome and anything cold is horrendous.

Things can always be tweaked, but from my experience, this is the kind of range I live with daily. BUT, I try to have a few hours at night in the 2-3 range to recharge. It can make the difference between becoming miserable or content for me. IR opiates can help accomplish this. Not a fan of Oxy though, it made me feel intoxicated...

That has to be reducing your range of motion. Has your doc approved this? Have you tried Lidoderm patches as well?

At night, experiment with laying on your side (your back to your husband) with your "bad" had resting on a down pillow away from any covers, without the glove.

While water falling on my hand hurts (the shower), still warm water feels great (pool, ocean, tub w/ Epson Salts.)

Night time seems to be the worse part of the day for me. Early morning is when I have my *easiest* time. I absolutely hate taking oxycodone/ those types of meds, however once the dr. introduced it into my cocktail instead of Lortab, I went from extremely irritable to somewhat mellow. So for now, that is what I take.

My Dr. advised me about the SCS. After a lot of research and discussion with hubby, I just don't know if it's right for me. Plus, I believe surgery to be the reason for my RSD to begin with, I can't imagine having it in my back or full body and feel so sad for those that do.

By the way, thanks for taking so much time on me!:Heart:

Just to clarify, I wear the wrist due to the fact that the original arm fracture was so severe. I had 8 surgeries on it to put it back together, my hand is not on my arm straight and I ended up having to have my wrist fused to support the hand. Like the isotoner glove, which I did try, it protects the skin from being aggravated and it sends a message to other people that there is an injury. It has caused a very noticeable atrophy to that hand and arm, and of course I am left hand dominant. Thanks Lisa

Yes, my Dr. knows about the glove. He agrees with you about the range of motion so that is why I have reduced my time wearing it to what it is now instead of never taking it off.

I will try this suggestion, thanks so much.

I try to not take a shower due to the pain of the shower hitting my arm. I like my bath time, I can gently ease my arm into the warm water and that is where I do most of ROM exercises. The hard part is getting out of the tub and having the cooler air hit it....ugh, it seems like I am paying for that 30 minutes.

WOW Lisa you have been through alot. I hope you find relief. Are you saying the therapy glove caused the atrophy or the brace? Thanks.

There are lots of options even with opiates. YMMV. I've never taken OxyContin (time released), only Oxycodone (immediate release) during a trial run when MSIR started to bother my stomach. For me, generic MSIR didn't give me the same narcotic high as Oxycodone did.

If you're taking OxyContin, again, their are other options like Avinza or Kadian (super pricey.) So, just because you like one drug better than another, there still might be better options within that family of drugs.

Even deciding on how you and your doc want to procede with dosages of IR and TR is complex and can be played with to see what works best for you.

BTW, the acceptance thing is a process that will take many years. I should have said that before. :o

Dear gatorsmomma -

Allow me to add my two cents. There are a number of true therapies out there worth pursuing, notably ketamine infusions from someone who knows what s/he is doing. Ditto blocks with Botox, Infliximab (Remicaide), etc. These are all treatments that offer better result in the relatively early stages of the disease - where you are now - when the CRPS is associated with a neuro-inflammatory process, than later on, when it's maintained by the brain itself, at which point the true treatment options become significantly more limited. ("Non-dominant unilateral" electroconvulsive therapy being one of the options, even though most ECT docs will only give it if you have significant "co-morbid" depression.)

That said, at least in my experience, the pain got more manageable as I hit the 5 year mark, even if, at the 8 - 9 year mark (without effective treatment, I was disqualified for entry into then strickly regulated ketamine trials because of other pre-existing medical conditions ) I developed other neuropysch conditions that are now debilitating in their own right. Even with years of meditation practice and pretty high level of equanimity.

To tell the truth, even with manageable pain levels, the last few weeks have been some of the worst since this thing started. (And my apologies to all to whom I have flaked socially of late: you know who you are.)

Bottom line: the sooner you seek out ketamine treatments or the like, the better off you will be in the long run.

take care,
Mike

As for the glove before I was dx with the RSD/PN I was put in an airboot and was in this for months and it made my condition worse because I lost so much range of motion. Getting out of the boot was so hard and so painful because my ankle/foot was used to being a certain way and protected but in the long run was making things worse.
As for acceptance, I think for myself after 3 years I deal better mentally with this then in the start. I am more rational and calmer. Not to say I don't have my days but overall. For me though I may have the same pain physically dealing with it in a better manner helps me get through the days. I'm not saying you have this problem but my experience. I do have a far way to go on this and trying to create a better life through the barriers.
Feel better all.

Lisa, this is a beautiful, compassionate, letter. One that all of us, no matter how long we have had this bear. We look for the good in each day, look for way to encourage others, in turn, lifts our spirits up Thank you for the encouragement, your friend, loretta

I just want to thank everyone for taking the time yesterday to help me during a VERY bad day! I know with this disease there will be quite a few as I have had them before.

Yesterday was especially hard because I really had my hopes up about the peripheral nerve blocks being *my answer*, *my path to remission* and when that wasn't instant, I lost it!

Today, is a good day and I think the block has actually helped. My spasms are significantly less, my swelling is down and I don't see as much blotchiness. I still have the burning but maybe that will curtail some too.

THANKS AGAIN FOR BEING A GREAT GROUP OF SUPPORT, especially at a time when I truly felt hopeless!! :grouphug:

Wow, I was really having a rough day yesterday so I need to clarify my clarification! When the original break occurred I was in a cast for 1 month, an external fixator for 6 months, and then another cast for 1.5 months. Since that point I have had many other surgeries, neuroectomies, proximal row carpectomy, two grafts from my hips (which now have RSD) into the arm, and two total fusions. Through this time I was constantly in a cast, custom brace or a cock-up brace. It has been so long that it is hard to tell what caused the atrophy, it just is. I would urge anyone to try to be rid of any outer support if at all possible. I do seem to get relief from warm sunshine and humid air. The tornado we had pass through the other night was predicted by me before the weather service got around to it!! I hope all of you are having a "good day", you are all in my prayers, Lisa (sorry for the spelling errors in this, just not sure about some of the medical jargon)

Lisa,

I hope you and your family made it throught the bad weather ok. I was able to predict our bad weather too, we wound up with floods. I attempted to not use my glove on beautiful days only to have a good breeze come by and put in the bed the next two days. I am so afraid of that so I just don't chance it.

I am starting to question my RSD versus others because after reading alot of the posts it seems people prefer soft fabrics. In my experience, the soft fabric gets cooler and rubs across me and causes my pain to be worse. I do desentization and that has helped me be able to touch my towels and stuff but the soft stuff can still be bothersome at times.

Also, does the burning ever go away completely? Even in remission? Today has been a better day than most yet the burning just wont subside. I know I have alot of homework to do about this disease and that's why I am here so I hope no one minds all the questions.

OK, had to follow you here; your introduction certainly moved me. From these details, you and I are quite similar in onset cause (hands with damaged nerves from invasive events). I was on the top step of an 8' step ladder, painting the outside of the house (yes, the step that says "Don't stand on this step"). Had just opened a new can of $29 paint (way pricy back then) when the ladder started to wobble. Fine, fall over ladder, but I'm not losing this can of paint! Somehow, I reached THRU the upper part of the "V" at the SIDE of the step ladder. The ladder collapsed, as they do when operated incorrectly, and I did a faceplant; the can tumbled away, painting the yard. Over half my body laid fully atop the collapsed ladder - I don't remember initial pain. I do remember seeing my arm, the protruding bones and blood, briefly fascinated that the back of my hand nearly rested on my forearm... then barrel-rolling and screaming until a big tree stopped me. The ex and my business partner got me in the house. Both fainted, and I drove myself to the hospital. The on-call (4th of July) ortho Dr said "Say hello to your little friend". (Yes, I love the old movie Scarface). I will finish with me by saying, there is no remission, there is a possibility of limiting spread, there can be life without just "sucking it up", and you can educate family (you'll learn some mental reinforcements as you guide them to reality and of understanding what you are dealing with).

Questions for you first:

- Is your hand/arm skin still glossy, shiny? Compare it to unaffected body parts if you have not noticed, or are unsure of my question. It's truly like a sheen on water from things like oil. Look for this from 360-degrees; top, bottom, between fingers, every millimeter of affected areas.
- Do you still have heavy perspiration (it's not, really) to the level of raindrops? Or a weak shower? That which would saturate tissue, paper?
- Do you keep a redness log daily? From brilliant, fire-engine red, to almost pink? Do you also map the color to where you would rate to a stove? (broiler, burner on high, low warming on glasstops) - and your pain level (account for time from last pain pill, if you take them)
- Does your swelling coincide with all, some, none of the above?
- Have you or do you still have regular corn husk therapy (think the proper tech/med term is Fluido Therapy - say corn husks to any PT/OT and they will know, instantly)
- Have you/do you have regular parafin therapy?
- Have you/do you have regular weight sessions that only includes walking while carrying a hand barbell, HANGING DOWN (increasing weight as tolerated)
-Have you/do you have regular sessions with the small child's bead maze "toy from HeLLo"? Have to post a link here that shows examples of what I mean; don't know their real name, their pure sight elicits abject terror for me :winky:: http://www.sensoryedge.com/mazes.html

To start educating your family, do web searches on RSD and the Civil War. Dr. Silas Weir Mitchell. Don't stop with the first one or two you find. Some out there, now, are very biased (for drug companies, infuriation of the long existence of PTSD, phantom limb pain, and current military benefits). Look for historical and medical articles. RSD's (causalgia then, CRPS now) true surface breakthrough came from Civil War injuries like limbs blown off from cannon and amputation without anesthesia and pain medication. It's real, it's old, and is controlled to differing extent with modern medicine.

Wow, this got long! If you answer, I will continue with more commentary from your answers. It may take a bit. I have a long, painful procedure tomorrow to pinpoint what recently killed my hands for good. Outcomes will not bring me improvement; just to allow a good Neurologist to write an article for his peers. Hey, it might help a future patient. He's not charging - I just pay in pain instead of dollars. :winky: Hang in there!! :hug:

Hi Katie, Yes I have shiny hairless skin on my arm and excessive nail growth and a type of arthritis that causes my fingers to become deformed but has little pain.
I often sweat heavily, soak my nightshirts, and I never sweat before ( yes I have had the change due to a hysterectomy). I do not keep a pain log or redness log, and have not noticed that the swelling or itching coincide with any particular color. I have had the corn husk therapy and de-sensitization without obtaining any good results, just more pain. I also tried the parafien therapy but it is too hot to tolerate. I no longer do any weight therapy and keep my dexterity up by playing the piano, but not at the level that I was at before the injury, sometimes just scales. Good luck with your procedure, it sounds like you have really been through so much that it has to be difficult to face even just one more. I will pray that someday there will be something that can help you. I really admire your beautiful attitude and humor. Best wishes, Lisa

gatorsmomma -

So glad you are feeling better! :)

Are you doing coordinated PT with your blocks or otherwise mobilising the RSD affected areas as much as you can while the blocks take effect?

The reason I ask about coordinated PT is because as a general rule, a regimented aeries of blocks made up of a local anesthetic and maybe a steroid is most likely to make a long term difference,* if they are coordinated with as rigorous a PT program as you can handle, when you are feeling better. See, generally, Complex Regional Pain Syndrome: A Review of Evidence-supported Treatment Options, Hord ED, Oaklander AL, Curr Pain Headache Rep. 2003;7:188-196 at 192 FREE FULL TEXT @ http://www.rsds.org/2/library/articl..._oaklander.pdf

I say this because, eventually, blocks stop working on most people with CRPS-1: CRPS-2 may be a different question if there is ongoing local neuro-inflammation.

That said, enjoy the relief. And think of it as at least ataste of a permanent cure.

Mike


* This is as opposed to the "blocks with Botox, Infliximab (Remicaide), etc." referred to in my last post, which, when given in small trials to patients with acute (fresh) cases of CRPS appear to be largely successful in putting the CRPS into long term remission. See, Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M Int Anesth Res Soc. 2007;105(4):1148-1151 FREE FULL TEXT @ http://www.rsds.org/2/library/articl...teck_Rolke.pdf and Sympathetic block with botulinum toxin to treat complex regional pain syndrome, Carroll I, Clark JD, Mackey S, Ann Neurol. 2009 Mar;65(3):348-51 FREE FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms140157.pdf (My earlier use of "etc" was unfortunately ambiguious.)

Thanks Mike :)

As for PT, I have used all the visits that my insurance will allow for the calendar year :eek: My therapy was awful due to at first not knowing what was wrong so we did ice etc. (which I am not sure if it's possible but I swear it made it worse) then, with no relief from the SGblocks I really couldn't get past the one pound weight etc. My OT was wonderful with me but it was so long before my Dx that we ran into issues.

The exercises I do at home now are;

I wear a weight on my wrist (it's 2 lbs) when I can tolerate it.

I bought a parafin wax bath and use it regularly, the heat feels great. I have a hard time with the intial sticking my hand into it but it's worth it most of the time.

I do ROM in the bath tring to make a fist and get my thumb to reach the area near my pinky. A work in progress.

I can touch my index finger to my thumb but can't sqeeze things between them.

I can not grip much at all, last grip strength test resulted in none for first attempt and then a little on the second.

My OT was very worried when my insurance wouldn't approve more visits so she went above and beyond to give me information on exercises etc to do at home.

Good for you! Hang in there.

Gators, Lisa - haven't forgot either of you - proc yesterday went BAD. Uncovered something test wasn't 4. Need to save what little hand use left to write my own ?/find place to post (long post I just put up on another thread was started days ago).

Gllad to read some symptoms still exist (sounds weird), they mean you are still in beginning stages. Can you start a log, every day, asap? Note everything, even briefly (redness, pain level, sweat amount, swelling, itching, activity when noticed, including touching something or if only a certain body part is involved, like a specific finger/toe). Even if just one is happening (should be at least 2 things, always - symptom & activity, or date & that nothing happened or same as prev day - mark other categories 'none' n/a as approp). I developed a shorthand notation to make it easier. When you find your personal medical RSD nut, they'll be amazed and love you! :)

A bit of harder news. Some PT things will simply have to continue, power your way through, plainly put - endure :Sob:. 4 me, it was child's wire & bead toy - bet that's a surprise :ROTFLMAO:

Hang in there - back with more when test damage subsides more. Katie :hug: