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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Cold CRPS plus
Jan 27, 2009
I have read alot of post's where they talk about the burning sensation that comes with CRPS. My "pain" or sensation seems to be different. I have experienced the burning, trust me. Ever since the outside temperature has been below @ 50 degrees though, my left foot feels like it is sitting in a bucket of ice. What is up with that? The temperature in the apartment is always around 70 degrees. The toes on my right are a little cold of course, it's winter here in Michigan. The temperature difference is driving me nut's. I work from home (gratefully) and I sit in front of the computer with my right foot in a slipper and my left foot wrapped in a heating pad, wondering how long it will be before I can feel my toes again. I have only had the CRPS diagnosis for a little over a year. I had my last arthroscopic surgery in September of '07, which resulted in me getting CRPS. Does anyone else out there have this issue? Also, I would like to know why my left foot is shrinking. I used to have size ten feet. I do understand that feet usually are different lengths, but now I have a size ten foot and a size nine one. This is something that I have just recently discovered. I have been on Lyrica (300mg) for the last 6 months I think, and Effexor xr (low dose,for pain relief, they say). I hate it. I feel like it has dumbed me down. I am "tipsy" all the time, unbalanced and slow. My short term memory is shot. In my work I call people for a non-profit organization to give out information. I have a script, one that I have been reading for the last three months. I blank out and I replace words for unknown reasons. I feel like I am in the midst of a panic attack the whole eight hours I am there. The pain and coldness of my foot is a giant distraction. Plus since I have been taking the Lyrica my thigh muscles feel like the after effects of doing 500lb squats. Also, as a result of this CRPS and my ankle injury, my knees are shot and I have developed a sacroiliac joint dysfunction, which makes it impossible to sit the time I am required to for work. I have a therapist that I have been working with for the last month. I was referred to her to learn something about bio metrics. Her job is to give me tools to be able to work through the pain. So far, no good. I guess that I am unable or unwilling to change my perspective about the constant, unrelenting, unwavering pain I am in ALL THE TIME! Hopefully through this forum I will find some people to relate too and be able to get a handle of this monster. Thanks for reading. :)
Re: Cold CRPS plus
Jan 27, 2009
First to address the muscle soreness from the Lyrica. Unexplained muscle problems, such as muscle pain, soreness, or weakness. If you develop these symptoms, especially if you also feel sick and have a fever, tell your doctor right away. Muscle soreness is a big warning that you should stop taking it. Call your doc asap about this. With the dose you are on you'll need to wean down and off of it.

It sounds to me like your foot is beginning to atrophy. Are you in physical therapy? My left thigh in the beginning had some atrophy and I reversed it in pt. Pt also was making things worse but the 1st time around I learned to walk on my own again and the atrophy went away so the heck of it I went through was worth it for those results.

The skin temp change is a part of rsd. Not only does the skin feel colder but we also perceive the affected part or parts as feeling very cold as well. Sadly there's nothing that can be done about it.

Welcome to the boards,sorry it's because of rsd though.

Hugs,

Karen
Re: Cold CRPS plus
Jan 30, 2009
Thanks Karen, I will defiantly bring those things up my next Dr. visit. I haven't been told that I am on a high dose of Lyrica. Does it seem like a high dose (300mg/day) ? Under Dr. supervision I have had my dosage adjusted and any less then the 300 my foot/ankle goes :jester:. What is the difference between Lyrica and the Topamax? Yes I have had physical therapy and actually just stated the pt for the back issues. Seems that I am extending the time I am in pain with the pt. Or, maybe the back has went from flaring to constant.
Re: Cold CRPS plus
Jan 30, 2009
Welcome to the boards... Sorry your going through this.. This board is great.. You will find so much comfort when you hear that there are other people out there experiencing the same symptoms...
I don't know to much about Lyrica.. So Listen to Karen and talk to your dr about it.. The heaviness in the thighs sounds to me, just another symptom of RSD.. I use to get that through out my whole body.. Such fatigue.. Usually when I would have bad flare ups.. and also when sitting down for a length of time.. Which you do do for you job..
The coldest is such a horrible feelling.. I am hearing when it comes to that.. I get such burning in my hands.. My feet use to burn really bad.. Now they are ice cubes.. only during flare ups.. Nothing takes it away. medication wise.. I usually use warm compresses... Heating pads etc..
Lately during flare ups.. My whole body is starting to feeling like that.. I just shiver.. I started using a heating blanket... What a difference that made.. Just a suggestion.. maybe while your at the computer you can use one of them...I also suggest while your at the computer to get up and move around every once in a while.. I can't sit for any length of time.. or I start feeling a flare up.. Even typing for a while.. My hand will start to get cold.. and in a few hrs it will be swelled up.. and through the nite I'll be in awful pain..
I've learned what I can and cannot do.. When to see the warning signs to call it quits.. Thats with all activites.. Its some yrs to figure it out...
I also had the memory thing.. That is the RSD.. It is not the meds.. I worked a dr office and I would be on the phone with a pt.. hang up and forget what we just talked about.. It was getting really bad.. my employer had to ask me to leave... Replacing words.. I know that one.. actually what I would to is say things a head of time where he words should not have been said.. like switching the words around....
In the past 2 yrs out of the 8 of having RSD.. My memory has improved.. I still take the same meds. The brain farts are gone..
Try to stay positive.. You have to.. its the only way to get through this..
We are all here for you...
Michelle
Re: Cold CRPS plus
Jan 30, 2009
[QUOTE=xaviermlm;3868603]Thanks Karen, I will defiantly bring those things up my next Dr. visit. I haven't been told that I am on a high dose of Lyrica. Does it seem like a high dose (300mg/day) ? Under Dr. supervision I have had my dosage adjusted and any less then the 300 my foot/ankle goes :jester:. What is the difference between Lyrica and the Topamax? Yes I have had physical therapy and actually just stated the pt for the back issues. Seems that I am extending the time I am in pain with the pt. Or, maybe the back has went from flaring to constant.[/QUOTE]

The "maximum" dosage a day of Lyrica is 600mg. They don't suggest any more than that and higher doses have shown no more effective than a lower dose.

The topomax is the same class of drug but slightly different ingredients. It's nickname is the "weight loss" drug. A lot of people experience a huge amount of weight gain on lyrica and neurontin. Topomax has no weight gain and those who switch to it generally lose some of the weight they gained on the other med.

Have you been able to contact your doc about the muscle pain? It's very important that you do because that is a serious issue that I've seen some people say became permanent. We certainly don't need any more pain than what we already deal with!

Hugs,

Karen
Re: Cold CRPS plus
Mar 5, 2009
Been a minute since I have posted, work work work. I want to say thanks to everyone that has replied. Again, your input is greatly appreciated. I am having a new symptom that I am extremely worried about. My calves are tightening, like a slow steady cramp, but does not cramp all the way. Hopefully you someone can relate. I experience this throughout the day while I am working (I have a sit down job), although it gets worse when I am trying to sleep. I have been referred back to the pain clinic to be evaluated for an epidural. I have had a sympathetic nerve block a few months ago which did nothing but make me hurt in other places so, I am not sure of this approach. This has gotten progressively worse over the last two weeks. I have been prescribed a mild muscle relaxer for the back pain that I have been having but it has done nothing to relieve the cramping pain. Lyrica is still at the same dose, Efexxor has been upped to 300mg a day for the last three or for weeks for anxiety issues. No other meds.:dizzy:
Re: Cold CRPS plus
Mar 13, 2009
[QUOTE=Gaollan;3909528]I didn't find anything labeled pk in blood work, the closest I found was CPK, which is Creatinine levels in the blood. That has to do with kidney function. I don't know about the 300 number because I can only find results on blood work using the those decimal numbers like 0.5 kind of thing.

You would think docs would tell you more than that but they don't always. *sigh* Just because we don't have medical degrees doesn't mean we're stupid! lol

Baclofen might be something that helps more. It works for a lot and hopefully you too. I love it because it costs very little. I pay $10 a month at walmart for 90. They implemented that one in time. When I took 2 a day it was $8. :)

Hugs,

Karen[/QUOTE]

Well, yesterday after my appointment with the head doctor I had a little time on my hands so I went on a mission to be able to speak with my Osteopath and maybe just maybe, be able to talk with my pharmacy doc. about that Baclofen.
I tend to think very little sometimes about the VA health care system and I think that mostly has to do with the bad taste in my mouth left by the benefits side of things. Today I guess that a few Doctors at the VA Ann Arbor Hospital were going to take a shot and try to change my mind about that, if not forever, at least for a little while. Luckily not long after I started my trek through the seemingly endless hallways and masses of humanity I ran into Dr. Mark Moga, my Osteopath. I needed to let him get a copy of my surgery report. The first surgery report that is, the one that set this trial off. In that surgery report might be some answers he is thinking. I will tell you that it says that I had an osteophyte removed from the joint between the first metatarsal and the medial cuneiform. I also had a chunk of my cartilage removed, sized 6x10mm from the posterolateral aspect of the talus that was barely attached to the joint. In that same area the report reads I had a significant cartilage defect approximately 10x10mm and being full thickness to bone. Using a small shaver the edges were beveled and then using a curved curette they curetted it until bleeding was established. Then off my feet for six weeks, wonderful pt then off to the field with my crutches. I remember feeling so dumb crutching my way out to guard detail. How funny I must have looked with my M-16 w/grenade launcher hanging off my shoulder,maneuvering carefully as I could over rocks and loose gravel and clumps of grass. Out in the field on Fort Hood, Texas is not really where you wanna be trying to recover from such a major surgery like this one would think.

Thanks for still reading......almost there.......

Fast Forward to 2009, second surgery was performed 1 year and a half ago. Diagnosis of RSD was @ 1 year ago. I have lost the extensor muscles of left my foot. I am losing the outside half of my calf muscle. The Lateral Gastrocnemius to be more precise. My foot is shrinking I think, at least my big toe. Weird? My big toenail looks diseased, yellow and crusty and groovy. Oh, and it sweats but is freezing. I have arthritis in my upper back between my shoulder blades. And the kicker, a herniation at L4-L5 which has lead to my first pt appointment that has involved traction. I am sure looking forward to next Thursday, thanks Kassia (my physical therapist I am sure you all could tell). Wow, I thought I was in pain before.
I am trying hard to not feel. I am sure that alot of people reading this are the same. I am lost. I am not feeling that the future is very bright. I know there is alot more pain ahead, maybe from another procedure like the Epidural they want to talk about, in another 5 weeks. Or, the torture device I will be strapped into for 20 to 30 minutes next Thursday in the name of a few seconds of supposed relief. I know there will be other physical changes from the bone loss and further atrophy. I know there will be more psychological changes, as much as I try to fight that too. I am way more moody. I wanna be alone, alot. The people around me seem to be more irritating and draining minute to minute. I feel like I am acting, just to even crack a smile. Work, I don't even wanna start that conversation, thanks.
Maybe someone can throw a little ray of sunshine my way? Or do I have to find that too, cause, I cant go outside right now ma, I'm in my underware! :eek: Not really, just trying to be funny! Don't wanna scare anyone. By the way I did get to talk with Caorline my Rx doc, as of yesterday I am starting the ween down the Lyrica to switch to the Topamax, hopefully by next Thursday and we will further discuss the Baclofen.
till then.......





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