[moonstar]

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)

[dreambeliever128]

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

[Denise G]

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

[HubbyWithRSD]

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

[debbiehub]

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

[moonstar]

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

[HubbyWithRSD]

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.

[moonstar]

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

[HubbyWithRSD]

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.

[moonstar]

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