NeuroTalk Support Groups - Pain and symptoms increasing (and new symptoms)

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Pain and symptoms increasing (and new symptoms) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/148452-pain-symptoms-increasing-symptoms.html)

Quote:

Originally Posted by cndangel (Post 762405)

OK guys... What is this Angry Birds you guys are talking about? I am always looking for a good game to help distract me from the pain at 3 am when I am awake yet again.... Will have to look on the itunes store and see if they have it for my iphone!

Oh and I can really relate to the forgetting of things... I have now started putting post it notes around the house so I remember to do things!

Take care,
Karen

Hi everyone Karen I have angry birds on ny iPhone and u can wrk out frustration and have a distracton.
I'm like u in so many ways most of the time my hand is curled up against my body cause I'm so afraid smthng will touch it bump It or anything. My palm is so sensitive to any link of touch, even a light breeze sends me thru the roof. When I shower I have to hold my hand out of the steam cause the water feels like nails driving thru the hand, so washing my hair is all done with my left. By the way I have TOS in left shoulder that shoots pain down the left arm so since Im overcompesating with my left that is also getting worse.
I try to stay positively best I can (I too cant remember things) I pray for those not so bad days so I can enjoy life just a little bit. Anyway sorry I go off on a tangent. I just have a lot to day and not many people to say it to who understand. I will remember ii in my prayers hope everyone sleeps well tonite

Your friend in Delaware
Susan

Quote:

Originally Posted by praying4u (Post 762429)

Hi Susan,

Yes, we sound like we are going through the same kind of things. I also have pain in my neck and my shoulder. The original injury was to my neck/shoulder area but the RSD has traveled down my arm to my hand.

Please go off on a "tangent" as much as you need too. I know it helps me to talk about it when things are just feeling too overwhelming. I also try to stay positive about what is going on, but of course its tough to do some days. So I have allowed myself times when I can have a little pity party as well.

I am going to check out this "Angry Birds" tonight! Was getting tired of my pogo games on the iphone anyways. :)

Thanks for the prayers and you will be in mine as well.

Your friend in Manitoba,
Karen

Hi Susan,

My sister Suzy lives in Wyoming Delaware. Near lots of Amish farms... She is a nurse, in the process of becoming a NP, and has helped me learn about RSD and meds and docs, etc quite a bit.

There are some excellent docs in the PA, South Jersey area. Dr Schwartzman at Drexel is the best, but there is a 2-3 year waiting list to get in. You can always make an appt then call for cancellations. dr. Knobler in Fort Washington is highly regarded, see Ain't so Bad Pete's postings for his contact info. and I loved Dr Getson in Marlton, NJ. see the recent ketamine thread for the docs listing and phone numbers, he is on there.

Your best bet is to try to see the very best doc in the field that you can, ASAP. Don't mess around. The sooner you get quality treatment, the better your prognosis.

Take care and keep in touch, Sandy

Quote:

Originally Posted by SandyRI (Post 762463)

Thank u Sandy, it was kind of u to reply. I live pretty close to your sister. I'm in Smyrna De and Wyoming is maybe 1/2 hour away. Ive heard of swartzman and his waiting list, problem is PA and NJ is over an hour drive one way. I cannot really drive anymore too much cause my left hand/arm (which is my "good" side) gets burning pain and hand goes numb. I usually get my husband to drive me to DR and injections (35 min drive) but he is disabled too. He had a tumor on his spinal cord which was removed last year but the tumor crushed his static nerve at the nerve root. So now he has burning pain down both legs into feet so he can't sit for long or tolerate long car rides. I'm so thankful for him, he would prob drive me cross country to help me even thou he suffers severe pain. Anyway its nice to have new friends to talk to. It's hard to explain RSD to family cause they never heard of it. My oldest sster did make an effort and researched it on the net so she had a better clue of my problem. But on here u can just start rambling about it and everyone understands and I dnt have to go thru long explanations. This site is a Godsend

Thank u so much
Susan

Sandy,

I'm looking into the aquatic therapy myself and the botox has really been amazing for my migraines but I'm looking into making a change for my ketamine.

I was just curious, do you do it still spread out over 2-3 days or do the bolous dose with a total of 200mg or more given within 2 hrs (which is what Shwartzman usually does over 5 hours). I've met another Dr.who could treat me montly if I desire it so I am seriously considering it.

Dawn

Susan - I've made amazing progress in the past 6 months since starting ketamine and alot of other treatments but like anything else, it all takes time to iron out and there's days (or weeks, even months where you just want to scream or bury your head in the sand and cry.) We've all been there. The past week has been a complete nightmare for me. I have 4 teenagers with a deadbeat ex for their father and I just constantly feel like I'm swimming upstream. BUT...the good days I've had since ketamine have been enough to remind me of who I still am and can be and that's damn well worth fighting for, if not for myself, for my kids and amazing fiance.

As hard as it is, really do try to find a way to find a laugh in anything and always have something to look forward to.

Dawn

Quote:

Originally Posted by SandyRI (Post 762359)

Hi - when my RSD was at its worst (much like you are describing), I found a lot of relief by exercising gently (or just resting) in a warm water therapy pool that is maintained by our local munipical youth center. The water is kept at least 95 degrees or warmer (I believe that is the temp, others will hopefully correct me if I am wrong).

The heat from the water helped my spasms and the blanching of my skin quite a bit. And I found that I could move much more freely without pain.

Some YMCA's and physical therapists also have warm water therapy pools. Try to find one that you can try out to see if it helps you. I really derived a lot of relief it. DON'T go into the regular pools - the cold water will cause WORSE spasms!!

I also take a muscle relaxer - Skelaxin - which helps with spasms. There are others like Soma, which is weaker, and Baclofen and Flexeril which are stronger. They will make you tired. I only take Skelaxin at bedtime or if I've done a lot of work with my arms which is guaranteed to give me a raging headache unless I take something (or lots of things) fast.

I also use a heating pad frequently on my spasming legs and shoulder and neck. I have heard of people that wrap themselves in electric blankets and find it quite useful.

The best of luck to you both. Often its just trying things out until you discover what works. I enjoy walking with my dog and my friends the most. Weather permitting, we will walk several miles a day. I believe it has been better for my RSD than just about anything else I've done, except for ketamine infusions (look up the threads here on Neurotalk).

xoxo Sandy

Hi Dawn,

I have a treating physician nearby, and get my ketamine infusions monthly. I go 2 days in a row, my dose is 200 mg each day, and the IV is titrated to run for exactly 4 hours. my husband just drops me off and picks me up in the parking lot at the same time each day I go. At first I got sick a lot from the infusions, but we seemed to have worked out the kinks and I've done much better lately - I needed more Versed and Zofran.

it is awesome not having to travel 300 miles every month to get my ketamine!! My first 20 or 22 infusions were in NJ.

If you switch, have the new doc get your records from Philly so he can do the infusions the same way. although at first, it probably won't be exactly the same...

Good luck, xoxo. Sandy

Quote:

Originally Posted by Reddawn600 (Post 763999)

I do not have any idea of how you all with arm and wrist and hand and shoulder problems play angry birds. It causes my feet and legs to tense up. But it does somehow focus your brain so you are removed from the pain. I just wish I could find something more worthwhile to do.

It is an app in the itunes but now there is angry birds rio, and they've pretty much made it impossible in some places.

And did you know that you only have to pay 99 cents once now and then you can use the eagle once an hour. They were probably bringing in the loot hand over fist and feeling guilty. I have yet to use an eagle. But I never say never.

have a less pain day.
pat e