Hello I am a new member
 

Hello,
I am new here. I have posted in social chat,but never on this site. I have RSD in my upper and lower extremities and I developed migraine headaches. I have had RSD for 24 years. When I was 13 I developed RSD in my upper extremities from a medical test. I had it under control,but it never went totally away. My doctor thought when you have RSD in younger years that it would go away. When I was 21 my RSD had spread to my lower extremities which I have no idea what caused it do that. I was 29 when my migraines started,but my doctor said looking back you have had migraine headaches for a long time just never diagnosed properly. I am now doing Tai Chi for my RSD and migraine headaches. I have found it to be very helpful. My migraines are doing better,but I still don't have them under totoal control yet. I hope soon my migraines can get under better control. I have enjoyed looking at the great sites that are posted in this community. It seems to be a really nice group of people. Thank you for letting me join the group.

LMJunior

Hi,
I am sorry you have RSD but it's great to meet you. I want to welcome you here. Everyone is kind and caring. Hugs, Roz

welcome!
 

Have you tried Topamax (or is it topomax? I can never remember...) anyway, it is topiramate... It helps my pain-- plus I have not had one migraine since I started taking it. It is used as a medication for migraine prevention I believe.

I cannot take neurontin or lyrica. Topamax works better for me than either of those did when I was trying them. I would hate to live in my body if it was not for this medication!

You have to work up slowly on it, and sometimes have to be on quite a bit to get relief. I fluctuate between 150 and 250 a day depending on how bad I am.. have been as high as 300, but my limbs were getting tingles that were quite distracting at that rate.

welcome again to the forum.

Jules

Thank you
 

Hello,
Thank you for the warm welcome everyone. I have tried topamax and neurontin and I couldn't tolerate either one. It gave me so much pain in my eye that I had to stop. My doctor told me I can only tolerate low dose medicine. Medicine does work for me but only in low dose. I am looking forward to being a member in this group. Take Care everyone

LMJunior

Can you tell me what kind of benefits you get from Tai Chi?

Do you have any problems with range of motion due to upper and lower extremity RSD?

Thanks in advance

Jasmine
(Jas)

PS welcome !!!
I am new too:)

:Wave-Hello: hi jasmine. welcome to Neurotalk.

love your name. i have a grand neice named jasmine. :D

Hi to both of you!
Glad you found us.
The forum is growing so much and so many new members!
To bad we have to meet due to pain though.

Welcome! :)

I wanted to say that I have range of motion problems real bad in my right shoulder. I was able to lift my arm all the way into the air, and then 3 days later I could NOT. That was back in November. I have yet to get my arm all the way up on my own (my physical therapists can, but I CANNOT... my muscles are extremely weak, and the RSD pain prevents me), but I'm working on it!

I have severe mobilty issues in my shoulders and neck (and a couple of other areas:D ) .
I would love to be able to do something like Tai Chi but I am really curious as to whether my body would allow me to do it :confused: .

That is why I am curious as to how LM Junior got started ..continued etc.
What kind of pace he/she is on .


Thanks for the welcome and thanks for liking my name .
I like it too:)

Jasmine

Tai Chi
 

Hello,
I use to do a lot of aerobic exercise for my RSD,but since I developed migraine headaches I could not do aerobic anymore it was to forceful. My doctor who treated me for my RSD said that Tai Chi is very gentle moves. It's says for any age group. I have two shoulders that sublux so I have to be very careful. Its all standing and no sitting on mats which I could not do because of my RSD. Tai Chi is suppose to be a good cardiovascular exercise and its so gentle which is great for me. I try to do it everyday for 30 minutes. I have looked it up on the internet and it has so many health benefits. After I do the Tai Chi I feel very good. Tai Chi has been the only exercise I can do now that doesn't bring on a migraine. I am so happy that my doctor recommended it to me. If I have a bad migraine or I don't feel good I won't do it,but I try to get back to it as soon as I can. I would always ask your doctor for their opinion about the Tai Chi. Take Care I hope everyone has a pain free day. Take Care

LMJunior

Hi,
 

Welcome to the family.

Have you had blocks for the RSD? I have never had any headaches from it and I have always said that I feel bad for people who suffer from Migraines. It has to be really rough to have a headache all of the time.

Blocks to me are one of the most important things to help get RSD under control if it can be done in a person.

I'm not much help on meds because I have tried them all and can't take them so I don't know how much help they are to people. I am on Methadone for pain since it was the only one we found that I could tolerate and it does help with the pain. It is getting to be the number one pain med.

Also I use lidocaine patches and those might work in certain areas of your body which you can feel the pain the worst.

It's good that you can do exercise that does keep a person moving better.
I try to do just what exercises my body will let me which aren't many but I don't give up.

I'm glad you found the group, maybe they will come up with the ideals you need to help get some comfort.

Ada

LMJ - Thanks for your imput.
I have heard that Tai Chi is very good for RSD,TOS and MS.
I am going to ask my PM doc about it next time I see him.
He gave me the ixnay on yoga due to my limited range of motion and general stiffness.
I so long for a range of motion. I often wonder what that would be like :confused:
I too suffer from migraines however I am still able to do a small amout of cardiovascular activity.

In his hands - I am glad you are getting a range of motion in your shoulders:)
As mine have been so bad for so long they don't seem to want to go anywhere.

Ada -I may be new to this forum but not new to RSD.
I have had more blocks than I can count and been down every route and tried every therapy etc that I can get my hands on .I am stubborn and determined to a fault.
I am still afflicted with this and the TOS double whammy amongst a few other things.
Oh well beats the alternative

Jas

welcome jasmine.... the people here are the best..glad you found them...they have all help me get thru so many nights filled with pain and depression..we all understand what you are feeling..and i am wishing one day that even some of our pain will fade away...stay strong..linda :grouphug:

THEY don't want to go anywhere- they hurt awful, but my physical therapist makes them move, and so I'm able to get the motion that way.

Have you tried physical therapy? I have seen some benefit from it... it is slow going for sure, but I am having better days over-all with it.

A lot of what I do at PT is desensitization (a major problem with RSD!), then movement and strengthening excercizes. Some I try and do at home, and incorporate them into daily life. That is hard, but I know the effort has got to pay off!!

Sending you ((hugs))... Have a great evening.

Ditto this!! :I-Agree:

The lidocaine patches do help with the pain!

Keep on movin'!! :hug:

Hello
 

Hello,
Thank you for suggesting physical therapy. I am doing my Tai Chi and also when I went to PT my doctor wanted me to do strengthening exercises for my arms and legs. I use a power band for my arms that is working out good. I can definately tell the difference when I am using the power band. My shoulders look better not so skinny and starting to build up muscle. If I don't exercise my arms and my legs get very skinny no muscle around them. If I keep exercising that will help with my muscles from being so skinny. The tai chi is giving me muscles in my legs too. Also, I do a few exercises with my legs. Thank you for your suggestions I always appreciate it. Take Care hope everyone is having a pain free day.

LMJunior

Some of the movements of Ti Chi or Yoga {arms help up or out for any length of time} probably won't be to good for those with TOS - but you could adapt the moves to what you can do and go from there.

But I totally agree that slow, smooth movements and motions will give a benefit in overall health. what ever amount it is that you can do.

A lady on the PBS station here does chair exercises and chair yoga.

Tai Chi
 

Hello,
I have two shoulders that sublux so I can't go over head,but like you said you just do it where you are comfortable. I told my Tai Chi instructor and she said its for your health so go however far you are comfortable. I am also careful with my legs because I have loose legiments. Even though I have these limitations I can do the tai chi decent. I practice it now in my living room so if I don't do everything perfect it doesn't matter. I hope you found these comments helpful. Take Care hope you are having a pain free day.

Lmjunior

In His Hands - PT has always done me more harm than good.
They always flare me something awful:mad:

I do what stretching I can at home and like LM Juniour said I work within my limitations without hurting myself, while at the same time doing something -if that makes any sense :confused: .

Thanks for all the sugestions and care

Jasmine

Welcome Jasmine and Lmjunior to NeuroTalk!!!! Its wonderful to meet the both of you, minus the RSD circumstances of course!! This board is amazing!! I found it back in Oct, 06... Sure glad I did! I knew NOTHING about RSD when I was diagnosed with it in Aug, 06.. EVERYONE on this board is down-to-earth, sweet, patient, understanding, respectful, caring individuals!!! I could still go on and on how terrfic everyone is, but Id be writing line after line! lol :) Hope we can all help and guide you through any questions youhave for us! Best of luck!!

Pain free hugs to ALL!!!!!

Always,
-Heidi