[KathyWP]

I have a muscle that is enlarged on my left shoulder, rsd is in left hand, and I think it is there because of the way I guard my hand whenever I'm having a flare. I have been on a major flare for the last month. I have also noticed my muslces on my left arm are an inch thinner than my right. I used to have a strong muscles from carving wood, but noticed they are gone now. I know rsd throws everything at us, and just wanted to see if anyone has seen this.

[jcherry]

Hi Kathy,

I do know what you are talking about. When I was first attacked by this monster in my left foot I could barely walk. I could not wear a show for about 2 years, and the atrophy did set in. My left leg was 2 inches smaller than my right one. It is still smaller but since they have me on meds that do allow me to walk, and wear a shoe it has improved.

I would have thought the muscle would have been enlarged in your non RSD limb, but you know it does affect us all differently.

i hope you get some relief from the flare soon so you can enjoy the holidays..

BTW, It's nice to meet you. I don't think I have met you before, but of course with my memory not being the best I could have and just not remembered..LOL

Hugs,
Janet

[coachV]

hi kathy,

i have the shrunken muscles too, in my hands....the big chunk of muscle, between your thumb and wrist is pretty much flat on both my hands - tho it was concave at one time, so i'm pleased that i've been able to restore a bit of muscle to the area.....however, the improvement has stayed the same for quite some time now, so i think that i won't be adding any more to that spot......the doc says that's what the "dystrophy" part of rsd means, shrunken muscles.

as for the enlarged shoulder, i think u might be right about over-working certain muscles when u protect your bad hand.....it might be worth having the doc check it, and maybe consider some physical therapy?....so u don't create a new or different problem?.....if the shoulder is still mobile, that's good but the last thing u need is a frozen shoulder (can u recognize the voice of experience?).

hope this answers the question.

liz

[Joselita]

Kathy,
I have the same problem with the muscle loss in my leg. My left leg is much stronger than my right (dominant but also RSD leg). The last time that a doc checked things I had 3/4 inch difference between my leg and right leg in muscle mass, the right one being the one that was 3/4 inch smaller muscle wise than my left. Since I am right side dominant, and I had very BIG and strong muscles in my legs from all of my years Fencing ( I LOVE these new smilies!!)and doing other athletics, I am sure that I had lost more than the 3/4 inch in my right leg. It was bigger just because it was dominant, and because of all of the fencing stuff. I wish that I knew HOW much I had lost.....but then, the last time that anyone actually measured this was a few years ago, and I am sure that things have only gotten worse. I will tell you, though, that it was because of that doc telling me that measurement, that I decided that I would try my damnedest to do everything that I could to not lose any more muscle than I had to. That is why I try to walk as much as possible....I want to try to keep what muscle I do have, and to slow down any more loss that will be happening. I have a long long time to go in this bod of mine....You know?

Anyway...Like Liz said, the difference in muscle mass from side to side is part and parcel of RSD. It is going to happen...it is just up to us to try to do everything and anything that we can to slow it down as much as we possibly can. So, please don't make this interfere with your carving! Or, to think that it isn't doing you any good to keep on with it for your RSD. You know differently than that! Who knows what condition your hand/arm would be in if you hadn't started your beautiful carvings when you did? You have found that you have this wonderful gift, and it is helping you to do it in so many ways! I just wanted to let you know that I think that your art is BEAUTIFUL and that I admire you for being able to do it.

As far as the enlarged muscle on your shoulder.....I again agree with Liz (and you) that it is probably from guarding, and possibly from how you have learned to use your hand to do your artwork (have you thought of that possibility? Could that be a possibility? I know that I have come up with some different and unique ways for doing things, that I don't even think about, until someone brings it to my attention by saying something like "how are you doing that? WHY are you doing that like that? Isn't that awkward?" or something along those lines. Isn't awkward to me...it is simply how I have adapted, and I didn't even think about it until someone said something...LOL). I also agree that it might be a good thing to ask your doctor about, because it is so easy for us all to fall into the "Oh, that is just because of RSD" trap. It never hurts to ask...especially if something has worried you, or made you wonder. No such thing as a stupid question...only stupid ones are the ones that aren't asked...or however that saying goes (I just like the first part....LOLOL, I do know that is how that part goes!)

I hope that you are doing Ok? Are you ready for the Holidays? I so totally am not! I haven't gotten hardly any shopping done, I still have some Christmas Cards sitting on the table, waiting for me to write in and send off (the envelopes are all addressed any everything...I just need to either write in them, or stick pictures of the kids in them. I have to do everything in stages and take breaks, otherwise I can't get it done at all! I am sure that you know what I am talking about, as does most everyone else here! LOL), and I have clothes to dig out, washing to do, and packing to get done all by Tuesday so we can be loaded up and ready to leave out of here by Lunch time on Wednesday. Takes us over and hour and half (almost 2) to get up to the airport, we have to be there 2 hours before our flight leaves out, and that is supposed to happen at 4:35. Then it is off in the plane for 2 hours, landing in Dallas for a 3 hour lay over, and then back in the plan for 3 to 4 more (I think 4..but I have gotten all confused with the time changes and whatnot. LOL) to get to Vegas at 10:30 their time. Basically that is 8 hours worth of traveling for us that day. I am going to be wiped out! And, I hav a feeling, still not done with everything that I need to have done! ROFL

I have to go and look on the Airlines Website for info about what you are allowed to take on the plane. I am wondering if you can take a little bitty size 22 or 24 (can't remember which it is...but is a small one) needle point needle. I am hoping that I can....because I am trying to get a present done for my Brother, and am not sure that I will be able to before we leave on Weds. I am pretty sure I COULD get it done on the plane(s) and during the lay over, if I am allowed that one, little bitty needle. I don't need any scissors or anything, because I willl bite off strings and trim stuff up better once we get to my folks. Just a needle. LOLOL...do you know? Does ANYONE know? Or...if not, I mean if I can't...does anyone know if there are PLASTIC ones somewhere? I am DESPERATE here! ROFL!

Sorry..I got all off topic there. I was just thinking about making stuff because of you and your wonderful horse carvings (I need to get a hold of you about getting one of those sometime! They really are Beautiful!), which led to what has been praying on my mind and what I have been worrying about...and BAM! I am off topic in a jiffy! LOL. Some things never change, huh? Sorry.

Anyways...I really do think that your "thinner" muscles on your RSD side are because of the RSD and what it does (Liz said it just like my doc did), and that you should ask your doc about the enlarged muscle also. Just to set your mind at ease if nothing else. I don't have any enlarged muscles anywhere on any of my RSD affected limbs...it is the opposite side that has the bigger muscles (and much stronger than they used to be.....not just bigger looking compared to how the right side looks. If that makes any sense?) because of how I guard, over use...and how I have had to figure out how to make up and do things and be able to get around. The only other muscle problems that I have are spasms and cramps.....and the crappy electrical shooting stuff that hurts and is in the muscles, can make them feel like they had a charlie horse happen, but I guess is a nerve thing too. And the Jerking, which I am not sure what is called...other and Jerking. LOL...I guess a type of spasm..but not like the painful long lasting spasms that I get. This is more like a spastic spasm? LOL, I know that I am not making any sense now!

Anyway..As per usual, this wound up being much too much long. Sorry for that too. You know how I am though; I type like I talk (), and that is too much, and I can't seem to get a grip on it no matter what I do. In fact, the more that I Try, the worse that it gets. Go figure. I sure can't figure that one out. I guess it is a sign that I need to keep taking a page out of Popeye's book ; I yam what I yam, and that's all that I yam! ROFL!

I hope that you are all ready for the Holidays...and that you have Wonderful and Happy Holidays this year! I hope that your weather isn't as crazy as it has been down here, but that if it HAS to be crazy, that it is crazy on the Warm side. I am really glad to see you post, because it had been a long time, and I was starting to get worried. I hope that you are OK.

Ok. Stopping now, I promise! Merry Christmas!!!

Love and (((Hugs)))
Jose <-- who is trying to not panic about everything NOT done yet, and not turn in to Grinchy Jose again (or still..or whatever! LOL)

[debbiehub]

My RSD started in my left foot-left leg muscles have gotten stiff and now my right arm muscle is going- Its hard to hold up my arm for any length of time- Writing is getting difficult- my right had is also swollen- so you are definately not alone in this-It totally stinks!!!

Debbie

[Debby]

I also started with it in my left foot, & almost immediately after strange sensations started in it, same thing in the right. 2.5 yrs more or less later started in with my left hand, then immediately in my right hand. GO FIGURE?? I sure can't figure it out *LOL*. I have a less muscular left leg cause of compensating for the one that hurts the most, the left foot. I did have SGB's right away for the hands & they really helped. I don't think the left arm/hand is less in size than the right one. The LSB's for feet happened almost a year from first onset of symptoms. Not as effective. I am having lots of symptoms in my hands again, they are happening alot more aggressively this time. Starting SGB's Jan 2nd. They do a series of 6 per side.
I too JERK. It is called Dystonia. Here is the website:
http://www.dystonia-foundation.org/defined/
It is the Dystonai Foundation website.
I remember my doctor told me it was called that.
I am really pooped so am gonna close now
DebbyV

[frogga]

Heya

,.....but jerking can be RSD due to the difficulties in the brain with processing movement - or thats what I understand.

..... I have been diagnosed with secondary generalised dystonia - but thats because of the fixed postures etc in arms/ legs..

....muscle loss.. definetly obvious on me... especially bum / thighs/ feet, hands and neck..bizzaro

any way - what do you take for your dystonia Debbie?

Rosie xxxxx

[LisaM]

COACH SAID:

the big chunk of muscle, between your thumb and wrist is pretty much flat on both my hands - tho it was concave at one time

Coach, this is EXACTLY one part of both of my hands I have a lot of problems with. I get HORRIBLE spasms in these areas. So bad that I about double over in horrid pain. Did you have this as well?

Additionally, another area in my hands I get those same spasms is in the fatty part just below where the fingers start. I don't know what that area is called, but if you look at your hand, Im sure you'll be able to see what I mean. I actually do see that area becoming concave.

Did you have spasms before the muscle wasting?

[Debby]

What I should have added in my previous post is that I notice that the jerking/dystonia was worse when I was taking a larger dose of Lyria than I am now & I also noticed when I was taking Gabitril it was worse also. And during the process of lowering Lyria it is again worse. But what is stranger is that it is worse in the morning upon wakingn even though I have been on the lower dose of Lyrica for about a month now. I spill more coffee in the morning than I ever have due to the dystonia. So I am not sure if it is caused by RSD or by meds. Meds being the anti-epileptic drugs I take for nerve pain. I also know if I lower either lyrica or neurontin further the burning is WORSE. So I guess I will deal with dystonia cause atleast it doesn't hurt. It is only annoying as heck.

DebbyV

[frogga]

Heya

Debby: I found that my jerking calmed down after stopping taking LYrica - my pain management dr figured that that was why my jerking had got so bad. Have you tried things like Carbamazapeine? also though I haven't had it some people I know have had a phenidol (think thats the wrong thing -its some toxic sea animal blood or something) pump inserted and have had really good success with that. Is there a way you can take the anti spasmodics an hour or so before you get up? cos alot of them take a tonne of time to work.

Lisa: I get similar problems - the muscles between my thumbs and hands are now flat - the spasms pull my thumbs backwards over my hands and have dislocated them - even with botox the tops of my thumbs still point backwards - it is very bizzare and painful!!!

Love

Rosie xxx