Pain and symptoms increasing (and new symptoms)
 

Hi everyone,

Thought I should touch base a bit and let you all know how I am doing. Always feel bad though complaining about myself and I know all of you are also in pain and have been struggling a lot longer then myself.

Since my last update my pain and symptoms seem to be increasing. The burn now seems a lot worse then it was. Also some days I can't even seem to let my shirt touch my shoulder area with out the burning sensation increasing.

One thing that is happening that is rather strange and new is when my arm is down it gets the white dots almost right away that cover my forearm, but if raise my arm they will go away. Anyone else ever have this? Before the dots/patches seemed to just come and go but now I can almost make them appear. By down I mean by my side when I am standing or on my lap while I am sitting down. As soon as I raise it up with in a little bit they go away.

I am still waiting for my CBT to begin. Workers comp has told me they will pay for the sessions...but who knows what the hold up is. A bit frustrating as I really need something to help me out of this depression I seem to be in.

I go see my doctor next week and I am going to have to tell her that the neurontin is just not for me. I think I gave it a fair shot but I was passing out, had horrible stomach upset and bad mood changes. I tried it for 2 weeks with the side effects not letting up and in fact the mood swings getting worse. Oh and lets not forget how tired it made me! I am hoping the doc will have another suggestion for pain.

Anyone have any suggestions for the dryness of skin? I apply lotion and well it doesn't seem to make a difference. my skin is pale looking and flaky. Ive also noticed on the hand that skin is starting to crack a bit. Any suggestions would be great!

Another new symptom that I seem to be having is muscle spasm. Not like I have had before but where I can visibly see it moving in my arm muscles. With it is a shooting pain almost an electric sensation. It is not happening daily but I have noticed it seems to be increasing lately. Also my 3 fingers on my hand (the 3 that sweat) seem to shake a bit. Not all the time but at times they do. Also sometimes they twitch on their own. Doesn't seem to last longer then a few moments but is something I have not had happen before.

So as always any input would be great. Helps me stay a little sane knowing I am not going through this alone and also your suggestions so far have been great!

Take care all and hope you are all doing well.
Karen

Hi Karen,

I"m happy to hear you do have an appointment coming up with your doctor and if you're anything like me (very forgetful when in pain), it might help to print your own thread or write your symptoms or concerns down somewhere.
That said, with the exception of the white bumps, tho I do have plenty of other skin oddities, all of your symptoms sound perfectly normal.

My RSD is in my entire left side and began in the left side of my neck. I get shooting pains down my arm along with tingling and numbness in my three left fingers. The best treatments I have had for this so far have been ketamine infusions, botox injections in my neck and I replaced Neurontin ( spent a year on it, never helped me a bit) with Topamax.

My muscles spasm in my shoulders, back and down my legs frequently. For that I usually take Soma as needed but honestly, since I began ketamine, I haven't really needed it.

As to the skin conditions, before I was diagnosed with RSD, I was diagnosed with Discoid Lupus due to the redness and white circular patches on my face as well as small broken blood vessels. Since then, it's believed by my doctors that it's caused by the RSD, not Lupus and is due to the inflamed nerves and it definitely does get worse when I have a flare up.

For dry skin, I use Eucerin products. On my face, I use corticosteroids or a steroid cream when it's really bad to get it under control.

I hope some of this helps and you find some relief soon.

Dawn

Hey RedDawn, I'm working on a belt/notebook/pen/phone/emergency meds/phone#2..... handy man belt so i can walk around and not forget any thing, and I am starting to write down who I tell what and when. My life is getting terribly complicated, I'm not sure how they thought I was going to work somewhere, 'cause all that doesn't even include getting dressed on the days I do get dressed. That soakin' bucket is my bugaboo now. too shallow, too hot, too cold, too long, i don't want to get out. Is there anything I don't have to decide on in a day. And my grandkids wonder why I like to play angry birds. I dont' have to think about anything else.!

I love Angry Birds!!! I had to spend $.99 for the Mighty Eagle to get past one of the levels, though....I was soooo frustrated!! A friend later told me that YouTube has videos of how you can win most of the levels. My kids would have probably figured that out.

xoxo Sandy

Hi Karen my name is Susan this is my 1st time posting here. I read your post and you described my right hand. I was diagnosed with RSD in my r.hand in Sept 09, from a simple routine carpal tunnel surgery. My hand and forearm is always bright red and I too get the white dots they just show up whenever, but I did try wht u said and held my ARM down for about 15 seconds and whn I brought it back up like magic it was covered in white blotches. I also get electricity shooting thru ( I call them zingers) my hand shakes and jerks a lot, I can also see the skin moving in and out on its own. My biggest problem is the hot burning pain when its swollen, then as the swelling goes down its replaced by intense cold and stabbing pain. There's no rhyme or reason it does wht it wants when it wants. I have a lot of muscles wasting and weakness, also the back of my hand looks shiny, dry and scaly. No matter how much I lotion up it looks the same. So I said all that to tell u that your not alone,.you have a new friend in Delaware going thru the same weird stuff. I'm always here for any of you. And you are in my prayers.

Susan

Therapeutic warm water pools
 

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

Hello, I would like to offer my new found love of Coconut Oil as a wonderful lotion. It has many great health benefits. I use it for lotion and for eating (cooking). I had to order it from an online company. But it works FABULOUSLY!! I had dry skin prior to this RSD thingy and have tried every lotion from cheap to expensive....so so. then my cousin told me about this Extra Virgin Coconut Oil....it goes on greasy, but w/in a minute, grease feeling gone, pores can still breath and off ya go for the day. It looks like crisco, but once you put it in your hands and rub together, instant liquid!!! check it out online for all of the great benefits. I ordered mine from Vitacost.com. Best prices and fast delivery. i make fruit smoothies with the stuff, cook with it OH, and it is a great hair conditioner too!!! I keep a jar in the bathroom and in the kitchen!!! I am so happy i tried it, because i love it!!!

Good luck!!

Hi Susan,

Thanks so much for your response. As much as I hate the thought someone else is experiencing what I am, it is nice to know I am not alone.
Welcome also to the board. I have found it very helpful to talk to others that can relate to the strange symptoms I seem to be going through.

I am guessing you are probably right handed as I am? I know its been a real challenge for me to learn to do everything with my left hand now instead of my right. Though I do try to use my right hand for small limited tasks, but most of the time its tucked against my body trying to protect it from pain.

My husband and I went out for dinner the other night and I was showing him the white dots/patches and how I can make them appear and disappear. I would put the hand by my side on the booth I was sitting at and then about 20 secs later I would put it up on the table and of course there are those mystery patches/dots! I did this about 5 times and every time they appeared. We took pictures as well, as mine was a work related injury. Also when I saw my neurologist I asked him "what exactly are the white dots/patches that appear on my arm?" His response was "I am not sure the why's you get them, but I can tell you I have seen it in many other patients with CRPS/RSD."

Even though everyone on the board has been so helpful it is nice to talk to someone that can relate to having RSD in your hand/arm. I look forward to talking with you in the future and hearing how you are doing! So please keep posting :)

Take care,
Your Canadian Friend
Karen

Hi,

Thanks for the suggestion! I am going to check it out. Hoping maybe I can purchase this at a local health food store!

Thanks again,
Karen

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

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

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

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

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