[LisaM]

My next appt with my pain doc is on Monday. Since November, I've been telling them my pain doesn't seem controlled well enough. My hands CRAMP really really bad...to the point where I can't even make a fist now. Heck, I can't even CLOSE THEM all the way at this point. Or, straighten them all the way. They hurt badly if I do. Even slightly bent, or held "normally" they throb and cramp. I can't take this anymore. Nightly, I'm in TEARS over this pain.

They've been blaming it on "the weather." Every time I tell them at my appts that I am not doing well, they say, "Oh, it's this darn weather!" and just write up my prescriptions the same. They have me taking magnesium for the cramping...and it's not working.

How can I get thru to them? HOW????? I'm TIRED of crying. I'm TIRED of them not listening. But the thing is, too, this time the weather was a bit warmer these past couple days, and it's STILL hurting. BUT...there was a new pharmacy that opened in the same building as the pain doc...they were handing out candy at the door, and asking patients to give them a chance, try them out. They were convenient...so I did. Only took 5 minutes, whereas my pharmacy, I'd have to drop the rx's off, and pick up the next day. BUT...when I looked, the percocet were YELLOW, and I always had WHITE ones before. The pharmacist said that it was the same thing, just a different manufacturer. Which, well, could be right....but what if the white ones worked better for me? So now that the weather got a tad better, it could be that the different brand of medication did this! So now th doc is going to blame it on that and make me wait again!

I don't know what to do! Any advice???????

[dreambeliever128]

My Methadone was round and had a line down the center and wasn't coated for years. A couple of months ago they gave me some that is long and coated and has a line down the middle. I called Steve and he said they had redone them so you might want to call another pharmacist and just asked but they do have different companies that make them and sometimes they just remake the pill.

Also as far as hand problems. My suggestion would be to see a hand specialist. I have one in the Springs that I go to. Actually I have one in Denver also but since he's so far away I switched to the Springs. He gave me some shots in my hand right next to my fingers about 5 months ago and I was just thinking this morning how good my hands are doing now. He doesn't want to do my surgery because of the RSD so he wanted to try the shots and they worked. Since you have TOS you may also have CTS, Ulner nerve or triggerfinger syndrome. You might want to be checked for all of that.

I do know what you mean about the hands. I was ready to let them cut mine off. We get to feeling desperate at times.

The weather here was 56 yesterday and will be until this weekend and we are suppose to get snow again. Not looking forward to that one. The weather does make a difference but I'm as miserable if it is too hot as if when it's too cold.

Have a great day, Lisa,

Ada

[LisaM]

Originally Posted by dreambeliever128

Also as far as hand problems. My suggestion would be to see a hand specialist. I have one in the Springs that I go to. ......Since you have TOS you may also have CTS, Ulner nerve or triggerfinger syndrome. You might want to be checked for all of that.

I do know what you mean about the hands. I was ready to let them cut mine off. We get to feeling desperate at times.

Thank you, Ada. Actaully the things I'm experiencing with my hands are from the RSD. My pt told me this would/could happen. It's why she gave me some of the certain exercises she did, and why you will see pics of some ppl with the rsd in the hands hae the "claw hand." What happens is the tendons in the center of the hand "shorten" and begin to pull the hand "into" the center of the hand, drawing everything in, until it becomes "concave" sort of. And I believe that is what's happening. It feels "tight" in there. The spasms are in the center of my hand, along the fatty part under the fingers, and also in my palms, and in the fat pad of the palm where the thumb is. It's related to the RSD. Sigh....and I tell my SO almost everynight when he asks what he can do to help, "You can cut off my arms! Right at the shoulder...right here! Please?"

And he wont do it

The pills, this pharmacist claimed that they are supposed to be the same as the white ones I get from my other, regular pharmacist....they are just made by a different distributor. But, I wonder if the "different distributor" has ones that just don't work as well. I wonder if there is a difference, or if other people have noticed a difference when switching pharmacies, and getting a different "brand"???? Would that make any sense, you think??? Would my doc use THIS as an excue now???

Thank you for responding hon.

[JOAN_M]

I Was Told I Have Reynauds Disease In My Hands. So That Could Be Your Pain. I Have Also Seen Where Reynauds Is Thought To Rsd. Ha! My Doctor Says ... What Difference Does It Make What They Call It, Neither Can Be Cured! I'm I With Him. I Try To Crochet And Do Other Things To Keep My Finger As Limber As Possible And Work Around The Cramping Up. I Also Use Heat On Them And Wear Only Leather Gloves To Contain The Warmth.

[dreambeliever128]

Lisa, I have heard some people say that the generic pills don't work as good as the name brand and also what you are saying about some not working as well as others I have heard that too.

Joan is right about the Reynolds. A lung specialist actually diagnosed me with that. I went to see about my breathing and when we got to talking about other problems I had he looked at my hands and said I had they Reynolds so that is a possibility.

Don't just chalk it up to the RSD, Lisa. I have exactly the same problems with my hands as you do and I was diagnosed with all of the above I told you. If you have insurance I think it would be to your benefit to see a Hand Specialist. I thought all of mine was from the RSD and I have seen 3 hand surgeons that said no it wasn't so your PT'er might be wrong. I'm not saying she's not good at what she does, I'm just saying she may be wrong on saying it's just the RSD.

Have a great day both of you.

Ada

[Jomar]

I added drug/pill identifier links and interaction checker links in the TOS forum stickys- so you might wan to make sure you got the right kind of med by checking with those.

I just added them to ours here.

[tayla4me]

Hi Lisa, I have the same spasm of my hands and feet and it IS horrible

I am now on Baclofan and Clonazepam which help heaps the dystonia heaps. I have whole body clonic spasms and have my baclofan through my intrathecal pump and it has been a godsend.
I also visit a hand therapist who ever so gently coaxes my hands out of the claw effect!
Wishing you luck

[HubbyWithRSD]

My hubby is on baclofen as well - We also (kids and I ) gently massage his hands when they cramp up and stretch them as well - Of course softly and if he needs to stop we do. Usually as long as he keeps them moving in some sort of fashion (nothing strenous) he does ok for the rest of the day. Do you have anyone who could help you out and do something like that?

[daylilyfan]

Lisa
have you talked to a neurologist about botox?

even though I had some sort of odd reaction to the botox when I had it... it helped me a lot. My neuro teaches about it's use. He has told me about people coming in with "claw" hands and so forth who are cured after botox injections. He has used botox for RSD a couple times. He has known of it's use in other RSD patients with great success for severe cramps, spasms and I think it's called dystonia?? where you can't open your hand? or muscles?

I think my reaction was caused by the way it is injected - with a needle that is electrified, similar to an EMG. It is used to find the EXACT center of a spasm to inject the medication into. I had an EMG in my leg and foot the first time I had RSD (when it was in my foot) and I could barely walk for 2 months.. the pain the EMG caused, and the SEVERE spasms it caused were the same type of pain as what happened from the botox - but no spasms this time because of the botox.

However -- after the botox... I no longer had the absolutely horrible muscle spasms in my arm, shoulder and upper back that made me cry, double over and see white. They were like getting hit with a cattle prod - I have been stung by a cattle prod and hit an electric fence (used to work with horses and be on a farm) and it was that same electric feeling. Botox cured that. Before the botox, I could not open my arm up hardly past 45 degrees. Now I have a lot more movement... but it's not 100%. It takes away your strength...I could not lift a pop can for weeks with that arm that was treated.. but after it was a lot better (your strength comes back). My reaction was WAY off the charts in pain - even for RSDers. So, don't let that stop you. It WAS worth it. I am considering having it done again, this time under my arm, in the arm pit area.... to see if it will free up the spasms there that a year of therapy and exercises have been unable to break free.

It can take a while - 6 weeks or more for the maximum effect of the botox to take effect. I don't think I realized how much it helped me for 3 months due to the reaction I had to the needle itself.

Ask your doctor about it. If you need to.... PM me and I can give you my neuro's name for your doctors to call if they need info on this.

When I looked into it last summer, there was quite a bit of info out there on botox and RSD. I imagine there is more now.

You will probably run into posts I have made on the old board, or other boards about my experience. I was pretty miserable!! No, I was in agony... especially the first 3 weeks. BUT... it helped SO MUCH!!! I would not be considering it again if it did not. Thinking of putting myself through that again -- it would have to have helped!! other that massage therapy, I think it has been the single most helpful thing I have done or medication I have taken. Also realize, I do not take regular pain medication (because I drive to work every day). If I had been on some sort of pain med, this would have been a lot easier. They tried putting me on duragesic to help me out, but I was to sleepy on it to drive to work safely, so I just had to stick it out.

My insurance covered the vial of botox (something like $1400) but not the doctor's fee for injecting it... which was about $300 due to the special equipment needed.

Also, have you tried massage therapy by a really good massage therapist? Mine does WONDERS for my spasms !! Look for one that is licensed to do cranial sacral therapy---- they have the most training. The doctor I saw at Cleveland Clinic said they are finding out more and more what great things massage therapy can do for RSD. I started massage therapy right after both my injuries that resulted in RSD.... and am convinced it is one reason I was able to continue to work after each one... and have not had nearly the problems some do. It hurts a LOT to start with, but like desensitization, it gets better. My massage therapist lets people come for partial hours if they only want a small part of their body worked on. So if you just wanted your hand worked on, she would work on you for 20 minutes 3 times a week... but it would equal one hours worth. Much less expensive that way. She likes to start with 3 times a week, then down to 2, to once a week.. to every other week.

[frogga]

Hey Lisa

I also have the clawing. I have botox for it and take a lot of muscle relaxers (I am on baclofen, diazipam and triphenydriyl). I also have splints which I wear at night to try and stretch the spasms out every day....

I must admit, for me, botox is brilliant. Well.. ok it' hasn't got my hands working properly - but I have alot of other disease issues which would stop that anyway.. I have generalised dystonia along with the full body RSD and the botox does calm the spasms down - I used to have such severe spasms in my thumbs that they would dislocate the joints and now... well.. they are abit better! yay....

I can identify so much with what you are saying, and I know how dreadful it is, and how dreadful the pain is with it. It feels like your joints are going to die if they twist even the tiniest bit more and like you are just going to... I don't know what...

Sending you loads of pain free hugs and I really hope that the pain drs start taking you seriously. The other thing I thought of was hot wax - this was something the physios used to do to try and calm down the spasms - they place your hands into warm wax and then peel it off. Stretching is something that is really important with RSD/ dystonic spasms otherwise the joints set like that.. (that's happened to my feet and ankles) and it's NOT good.. I know that stretching is agony - but even once a day is better than nothing!

Loads of Love

Frogga
xxxxxx

PS tayla - I get whole body jerks and spasms too. They SUCK!