rsd spreading,,,,
 

well here it goes again....going to be a short update..steve has been home due to back pain and have limited use of comp... back to neuro again tomorrow...have been having spells of vertigo and fell in shower dec 1... severe pain, swelling and intense sensitivity to anything even touching my left ankle and left side of knee now..add that to the mini-strokes, the rsd in my left elbow and the fibro to my entire back and neck spasms.... i am ready to pack it in and quit..my mom had bad ankles and couldn't walk for so long that she gained alot of weight and passed of a heart attack at the age of 53. am i really following in her footsteps??? i have lost all hope..my therapy(mental) isn't really helping...how can it??? when i have done all the tests and trials and therapy that i can do and i am just getting worse... if it was not for this board where others totally understand what i am going thru i would have nothing....my good friend who use to understand is telling me that i am doing this all to myself(mentally)..now i don't even want to call her when i am feeling bad..she keeps telling me to remember the boy with no skin...and deal...i am so tired and shaking so badly.can't type anymore...thanks again for listening and UNDERSTANDING!!!!!!!----linda (moonstar)

Hi Moonstar,
Sorry to hear that you are having such a time of it. I have the RSD in my upper body mostly so I can walk but I am very limited to what exercises I can do. The Fibro bothers me a lot and my legs and feet give me problems if I am on them too much.

I was wondering if you have had some PT for you knee. I don't mean lifting or running but I'm thinking there might be some good PT for the knees.

I have had it for my arms and back and I have had a lot of massages mostly. Also I was wondering if you had hot water therapy and if that helped you any.

I don't think we bring this on ourselves. It's just that if we don't have the right help to pull ourselves back up then we can't get there. We can't do it on our own.

I have councelling for depression and have had therapy as I said and blocks and triggerpoint injections. I still get the triggerpoint injections. I haven't seen many people on here talk about them but they do help. My Dr. used Lidocaine, Mericaine or Ketamine meds for the injections. I have only had maybe 2 steroid shots. Since I have to have so many he stays away from the steroids.

Someone mentioned Dr. Hooshmand's puzzle have you went to that sight and read on some of his treatments that he suggest.

It's very hard to pull ourselves up with the RSD and I honestly don't believe that it can be done without some good support.

I hope you start seeing some better days.

Ada

Hi Moonstar!

I hear your pain! Hang in there because you never know when the next thing will help. Is Steve your SO? Is he supportive?

I know how it is to "burn out" your friends. I quit calling mine years ago, except for one, who also lives in the front house (I live in her guest house). She's only 31, & has tried to help me when she could (full time job & 3 kids). But she's been very tired & not well for a year, and just was diagnosed with Fibromyalgia. She has no insurance so has no treatment yet. She's in a lot of pain, etc.

Can your doc try you on a different anti-depressant? I read Dr. Hooshman (sp) has a couple that help with the pain as well.

Anyway, we are all pulling for you! Please keep us posted about how you are feeling.

(((Gentle Hugs)))

Denise

Linda,

I am so sorry to hear about what your going through. It's difficult when your family and friends do not understand. Support is important. Have you tried sharing with them the information that is available on the web? It might help them understand more.

We have a friend of the family who recently got RSD just from being hit by a tricycle....My sister could not understand how something so minor caused it (she understood my husbands condition - first time being burnt with acid and the second due to surgery - but not hers as it was minor). I shared with her this information (it became a little more clear for her...)

http://www.rsds.org/2/fact_fiction/index.html

http://www.rsdhope.org/Showpage.asp?...1&PGCT_ID=2953

Have you tried anything for the muscle spasms? My husband just started a muscle relaxant (generic form of Zanaflex) and it seems to help when he's taking it - at least he's not spasming and can get some decent sleep.

Know that we are here for you - Any time you want to talk....just give a hollar :)

support group
 

Maybe you can try coming to our support group- As I told you it is in smithtown and it is helpful to talk to and meet other people- We meet every first friday of the month..Let me know if you want to come.

Debbie

hi to all..
 

can't believe i did it again...took to long to post with bathroom trips....i will make this faster....
i am on prozac (60 mgs for now)
xanex(2-3 per day)
have been on several others and combo of others--no help
vicoden es(5-8)
lyrica(100 mgs 2-3)
skelaxin(800 mgs 2-3)
oxycontin(20 mgs 3-4)
meclizine(3x's)
ambien cr(to sleep)
provigil(have samples ins. comp won't pay for these--- 200 mgs to wake up)

steve is my boyfriend of 7 yrs. who has siatic pain problems now so he understands somewhat....

tried therapy hurts alot more than it helps..do exercises at home 2-3x's daily

rsd pain to left arm--due to work on the job injury... workman's comp will not cover any other injury--consequenstial--or not--to the original injury 13 yrs ago...

almost made it thru one day...at least i got thru this letter 2x's with out my arm shaking as bad as it was this morning....

oh i almost forgot..debbie!!!!! yes i would love to go to the meeting...i keep remembering after the first friday...but i wrote it in my datebook(in pen) and will not forget next month...thank you again...do you have an address or # to the library? feel free to pm if you want to....thanks for helping,caring & sharing....linda:Sigh:

Just a thought here Linda.....

Could it be your on too many meds and they are making your symptoms worse OR counter acting each other???

Maybe some of the symptoms you are experiencing too are side effects of the meds your on...

Like I said - Just a thought and something to consider.

hey hubby with rsd.... nahh thought of that and checked and rechecked...switched to others...tried alot of different combos and not much of a difference...just somemore extra pain with others.....that is with and without therapy too.. tried and tried and tried and tried...my ortho who has seen me once a month for 13 yrs tells me that i was put on this earth to be tortured and will live forever....he is only joking but..it hits home...
i know there are others who have it worse than me and feel awful for them too..would love to take all our pain ball it up and send it floating.... either i am very sleepy or wired with very little energy...tried taking less of provigil--snoreZZZZZZ..tried other meds..double snoreZZZ..thanks for advice..linda

Meds
 

The reason I actually mentioned it is because one of the side effects of Lyrica is muscle spasms....But if you've looked into it - I'm not sure what else to think - I know RSD causes them - obviously - but I thought the Lyrica might contribute or make them worse - Actually this is something we are considering with my husband as well.

I saw someone mentioned spa or hot-tub therapy - Have you tried that?

It worked wonders for my husbands leg - He found relief with it - Of course nothing permenant but he could manage for a while.

hi.. yes i know and another side effect is weight gain(which i don't need either) they are using it for the nerve damage and it does seem to help????? not too sure yet..seemed better with it lately..
the side efffect of most of the meds we get to use all have side effects...damned if i use them..damned if i don't???
the hot-tub therapy actually hurts alot... my nerves in the elbow are not running the correct way..some of them are hitting the surface of my skin...anything that comes even close is severe..water is like short circuiting my nervous system... i have spasms something awful in my arm..when the nerves move or my fingers move a certain way OUCH!!! i use the lidoderm patches for the elbow and part of my forearm where they cut the tendons (2x's)..the wrist where they did the carpal tunnel surgery...now i am putting them on my ankle and side of left knee..can only use 3 at a time so i cut them to fit... asked dr if i put them on my head would it help???? but of course not..no such luck...trying to keep my sense of humor....linda

Hi Linda,

Sorry you're having such a dismal time, I hope you can find something to give you some relief. HwRSD makes a good point. I'd try to find a replacement for the vicoden, which is an opioid, it often causes allodynia/hyperalgesia all by itself.

here's an extract from the really excellent article posted by Roz/Buckwheat which is at:
http://appneurology.com/showArticle....leId=196513289

"Although opioids are the gold standard for treating acute pain, their use is highly controversial in CRPS. "We know that opioids cause hyperalgesia," said Harden. "If you have a drug that causes hyperalgesia and a disease that is characterized by hyperalgesia, how logical is it to use that drug in that disease?" Oaklander agreed that it was theoretically possible for opioids to worsen CRPS, but she said that this should not prevent physicians from prescribing opioids for certain patients who have CRPS. She did, however, caution that the lowest effective dose should be used. Some pain specialists advocate the use of methadone for the management of CRPS, according to Cruciani. Another possibility is an opioid in combination with an NMDA antagonist such as memantine (Namenda)."

You never know, just replacing that might help somewhat,
all the best :)

Your head - :p - LOL - I know that feeling some days...

Sorry to hear about the spa therapy not working for you - I know it sure helped hubby - Thought it might be something but...no such luck it sounds like....Grrrrr - Wish I had an answer for ya...

How do the lidoderm patches work!!?? I'm thinking this is something we'd like to suggest to hubbies Dr. - With his ulnar nerve damage this might be something that could be really helpful for him.

thanks artist...i will take that to my dr and see what he says..he is not a big fan of using methadone as i have asked him for it in the past.... and he rejected it saying he doesn't want me on that...or dilaudid...says it is too strong???? i said"stronger than vicoden es?" i have cut down on that alot was up 10-12 per day... almost 2 every 4 hrs.. and functioned???

yes!!
 

hubbywith rsd.....the lidoderm patches have helped more than anything they have tried so far..they come in large squares and you can cut them to fit most places..i get creative and use different colors of thin knee-high stocings(cut of course) to slide around the patch to keep it in place..it has the lidocaine on the peel back side..needs to make a good contact though...hope this helps hubbie....

Hi Linda,

Yes, do read the whole article, it's the very best overview of RSD I've ever read, and print it out for your doc - who sounds pretty OK, ...yes dilaudid, can't remember the details, but it can do nasty things to you... this is one piece of writing I think we should all take to the doc, actually.

The first year I had RSD was the worst (so far) and I was amazed at the huge gap there is in pain medication - the ones we're given by prescription just aren't strong enough, or they knock you out, but still don't work well (nothing actually exists to really do the job when it's in full flare)... or the ones that do work are the anaesthetic drugs used in hospitals, too strong. There's nothing in between.

Perhaps you should be looking at an intrathecal pump - did you read fmichael's link, about Prialt? Maybe take some research about that to the doc...

I wish you luck with everything, hope you find something soon,
all the best :

hi artist...last post i get to reply to tonight..steve comes home and the computer is his till at least 5 am. just hope i can sleep tonite can't seem to find my blindfolds.... i will bring article into dr visit tomorrow (neuro) she doesn't decide on most of my treatment but i will get her opinion too... they are really reluctant to to any further surgery on me....the consesus of all drs is that further surgery will injure me more...they say more soft tissue damage may be done..and the probalabity is high that it will...my dr has been up late for 13 yrs trying to come up with something that might benefit me...says my chances are not good...but then one day i might wake up and it will be POOF gone!!!! wishful thinking on all our parts but i am trying to be optomistic (for now -tonight- anyway) :eek:
thanks for your help and i will try to send an update tomorrow...peace to all***** linda

Good luck tomorrow - now get off the computer and get some rest!!
night night (it's lunchtime tomorrow, here! :D )

hey...
 

took a few days for me to get my stuff together after seeing the neuro. the appt was a complete waste of time...they have nothing to really do or say to me..appt was just for getting refills of meds.. brought in the articles that i copied from the site and the dr didn't have much to say... one good thing was she gave me more free samples of the provigil...i take 100 mgs in am and then another 100 in the afternoon...seems to be helping some..was told it may take some time to get the full benefit from it...been feeling very defeated lately..i am going to go to the support group that debbie reccommended...i am going to go back to work on the 21. can't stay home any longer..messing with my depression too much...the drs don't want me to go but i know i have to for as long as i can..until i know that i can't...i am fighting it cuz to me it is letting this disease beat me and giving up..i know rationally that i have little choice in the matter...what happens is what happens..doesn't make me weak..cuz i am trying so hard to keep it together..just don't want to do more damage to myself for being stubborn and hard-headed... anyway ....no more drs for a few weeks..need a break!!! thank again for caring...linda :rolleyes:

Hey Linda,

Sorry to hear your appt didnt go as you wanted it to. My hubbies was the same way last time - It was like talking to a brick wall. The ONE saving grace is that he is only 1 of 5 Dr's he has - This one is the one who originally diagnosed hubby with nerve damage so we just need to see him for med updates and so he can "keep up" with him. Two of his other Dr's (they work as a team) diagnosed him with the RSD. They are in charge of his treatment there and we are talking with them in a week or so...Hubby also has had contact with him and he knows we're looking at some med changes. Maybe that patch??? And starting of blocks?? We're not sure yet but will know soon.

I hear ya when you mention work - It is driving hubby nuts not working - He tries so hard to get things done around the house but there is so much he cant do. He also cant drive due to this being in his arm and the meds he's on so that shoots work completely. He decided to do some volunteer work on Wednesdays. I'm available to drive him for that - It will get him out of the house and feeling useful again. I understand your feelings on that - You need to have a purpose and to feel needed and plain just have something to do. I'm betting going back will more then help your depression.

Hang in there girl, We're here for ya :)

Hi Linda,

Oh, how disappointing about the doc appt...how are you coping this week? You OK?
Just wondering,

all the best :)

what a caring group we have here..
 

hi artist..thanks for asking about me..this week has been awful...don't remember wed. at all..was in deep,deep sleep..slept from 9am-10pm..without waking.woke up at 10pm with face numb and just out of it..fell 2x's on way to bathroom and then went back to sleep again. thurs. got brother on bus at 9am and went back to sleep this time only till 4pm..felt some dizziness but otherwise ok(just usual pain +8)..went to ent today and they have no answers only more ????'s .they are going to seet me up with a sleep study test..see what that shows..:confused: stayed up today till 7pm then slept till 10pm. needless to say i can't go back to work yet..hoopefully 1 more week..need to get back to work..have a mortgage to pay and need a routine to ttry to stick with..very depressed in alot of physical and mental pain...hope tomorrow is a better day..for us all :grouphug: thanks for being such caring and understanding friends ..trying to cpe the best i can:hug: --moonstar