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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 01-27-2009, 03:00 PM   #1
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Cold CRPS plus

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.

Last edited by xaviermlm; 01-27-2009 at 03:27 PM. Reason: punctuation and grammer

 
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Old 01-27-2009, 04:53 PM   #2
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Re: Cold CRPS plus

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

 
Old 01-28-2009, 01:35 PM   #3
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Re: Cold CRPS plus

I have the same problem with the cold feet, I'm sorry you're suffering, but am glad to know I'm not the only weird one out there with that problem. I do the heating pad thing too! I have the same memory problems and if it makes you feel any better about that, I lost 3 whole days a couple of weekends ago. Scared me half to death, I even watched a friend's kid while she went to the ER, and had conversations with people and was apparently perfectly normal the whole time.
I was having the sacroilliac joint pain and they sent me to a therapist that gave me exercises that actually seem to work.

I can't believe how much they've helped with that pain. They've worked so well that if I'm very careful and don't move much the pain stays around a 2 or 3. Also, I just posted this on another thread, but ask for a sample of the Voltaren gel for that if they'll give it to you to see if it works.
=)

Last edited by moderator2; 01-28-2009 at 02:28 PM. Reason: disallowed use

 
Old 01-30-2009, 03:41 PM   #4
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Re: Cold CRPS plus

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 . 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.

Last edited by xaviermlm; 01-30-2009 at 03:46 PM. Reason: add info.

 
Old 01-30-2009, 03:57 PM   #5
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Re: Cold CRPS plus

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

 
Old 01-30-2009, 07:07 PM   #6
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Re: Cold CRPS plus

Quote:
Originally Posted by xaviermlm View Post
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 . 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.
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

 
Old 01-31-2009, 10:05 AM   #7
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Re: Cold CRPS plus

The one that works best for me is a modified upward facing dog if you are familiar with yoga at all. Just leave the pelvis on the floor instead of trying to lift that as well. It sounds stupid, but I was amazed at how much being on your stomach with your legs in the air moving the legs left to right like we all did as kids watching cartoons helps. Also another yoga thing is a modified lotus where you tighten your stomach muscles while lying on your stomach and lift the opposite arm and leg and hold for a few seconds. All of these in reps of 10. Let me know if these help, I have a few more but don't know how to or am even sure if scanned material can be posted so I'll have to work a little harder to explain them. Let me know if these help or you need more instructions. The drugs and headache have me fuzzy this morning

 
Old 02-02-2009, 05:54 PM   #8
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Re: Cold CRPS plus

I also have the cold sensation. It is miserable and I have tried to describe it to my husband but he just looks at me like the doesn't understand. It is the strangest sensation to have such a bone freezing feeling but also have a burning sensation. The stellate ganglion blocks that I have started getting have helped but I never know from one day to the next what to expect. The memory thing drives me crazy because I will say something and it is like I realize that what I said was just not right. Find a really good pain management doctor they can really help. The first one I had was the most rudest uncaring person that I have ever met, but the new one is wonderful and answer all of my 50,000 questions that I have. Good luck and hang in there.

 
Old 02-04-2009, 10:12 AM   #9
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Re: Cold CRPS plus

Quote:
Originally Posted by my6angels View Post
I also have the cold sensation. It is miserable and I have tried to describe it to my husband but he just looks at me like the doesn't understand. It is the strangest sensation to have such a bone freezing feeling but also have a burning sensation. The stellate ganglion blocks that I have started getting have helped but I never know from one day to the next what to expect. The memory thing drives me crazy because I will say something and it is like I realize that what I said was just not right. Find a really good pain management doctor they can really help. The first one I had was the most rudest uncaring person that I have ever met, but the new one is wonderful and answer all of my 50,000 questions that I have. Good luck and hang in there.
Glad you have found some relief from the blocks! I have had one block, unsuccessful. I will not do that again. Due to problems with my back and knees the whole nerve block experience was not fun. I have a good team, I think. All my CRPS/RSD care has been done through the VA. So, I am unsure if I am getting what I really need or just what will get me by. I have a pain doc and a head doc, osteopath, orthopedic doc and a physical therapist. I have not had a bone scan, sweat test or MRI on the foot/ankle. I have a MRI scheduled for my suspected sacroiliac joint dysfunction. Due to a misunderstanding with the VA, I am unable to use any opiates to control the pain.

Last edited by xaviermlm; 02-04-2009 at 10:13 AM.

 
Old 02-04-2009, 02:12 PM   #10
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Re: Cold CRPS plus

Haven't posted in a long time but, thought I would jump in here.
Quick background: broke leg and foot at work in Aril 2007. and became the WC case that won't go away no matter how hard they try. Dx by two WC docs with RSD in left foot. Cold is my enemy even though I live in Florida. In warm-hot weather the temp of my foot is 75 to 85 degrees and in cold weather (like now) my foot goes to 68 to 70 degrees. The cold sensation is like frostbite and to the touch it feels like an icecube. If someone has trouble believing (like my DW at one time) have them grab hold. I bought an infrared thermometer (Radioshack $20.00) so I could chart my temps for the docs. Normal skin temp for a foot is 91 to 93.
WC sent me recently for and IME to debunk the RSD but it kind of backfired. The IME doc ordered a dexa scan which showed osteoporisis (unusual for a male), an ultrasound of both legs which showed no blood flow to my left foot (they nearly sent me to ER in case I actually had blood clots closing off both major arteries that feed your foot) which in reality was just vasospasms constricting the blood vessels and finally an EMG/NCV which was totally normal (another sign of RSD). After the EMG/NCV I went from cold to hot RSD for 3 days with my foot kinda staying at 98 degrees during some really cold weather (kinda nice LOL!). My cold foot is cold even if I'm inside, as long as it is cold outside which is really hard to get used to. The only time it fells good is at night with the electric blanky (wish I could take it to work but it's not easy chasing shoplifters with a blanket wrapped around your foot). Best of luck, any ?'s about cold let me know.
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Old 02-11-2009, 12:31 PM   #11
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Re: Cold CRPS plus

WOW. Just when you think you have it bad............. Thanks for the response. So nice to see I am not the only one. question, how come the pain level goes up when the coldness goes away? It has been warm (50's) here in MI the last few days and thank goodness the cold foot syndrome has subsided but, my pain level in that area has shot up. Being that I am being treated by the VA I have not had all the tests. No bone scans, no MRI's, sweat test's....nada. My effected foot (left) is shrinking. I have no idea when it started, and I can't just run (hahaha) to the doc's whenever I think something is amiss. My legs, damn, I wake up every morning feeling like I ran a double marathon that night. Oops, sorry I started whining. Any suggestions? I do the pt that has been suggested and still nothing.

 
Old 02-11-2009, 03:47 PM   #12
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Re: Cold CRPS plus

50's is still cold, even though it's "warmer" than what you did have. Pain can go up and down for no reason at all as well. It can go up just because you walked on the foot just a tad too much. If a front or storm comes through or even near you the pain can go up. Lots of reasons or none at all.

The foot is experiencing the nastier side of rsd....atrophy. That's the "shrinking" part. I reversed what bit of atrophy was in my thigh back at the get go but for others, once you start experiencing it, sometimes there is no reversing it no matter how much pt you do. I'm sorry that it's happening to you.

Pain and stiffness is often more intense when you wake up because of the lack of motion while sleeping. Just another one of those things that are. I don't move for an hour after I wake up waiting for my pain med to kick in. Even a couple of hours after I walk like a 90 yr old woman! LOL

I didn't see any whining going on in your post. Just a bit of venting and questions about the crap that is rsd. LOL

Hugs,

Karen

 
Old 03-05-2009, 10:50 AM   #13
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Re: Cold CRPS plus

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.

 
Old 03-05-2009, 02:31 PM   #14
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Re: Cold CRPS plus

Sounds like the muscle spasms we all deal with. What muscle relaxer do you take and how much? I take baclofen 10mg 3x's a day. It's doing it's job to keep the spasms and limbs from jerking a billion times a day. I know others who take what I do at 50mg a day. There's also Soma which is another relaxer. These 2 I know are for long term use, where Flexeril shouldn't be taken for longer than 3 weeks. That is for short term only, like a back thing that will "heal" in a short time.

Also, low potassium levels will cause muscle cramps too. Have you had any blood work done lately? You can always eat a banana here and there or get a supplement and see if it helps tone it down.

Hugs,

Karen

 
Old 03-05-2009, 10:33 PM   #15
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Re: Cold CRPS plus

Karen,

I did not know potassium would give you muscle spasms.Some of the ones I have are almost like a really long charlie horse.So how much potassium would you have to take?What about like a banana a day?Is that to much? I'm also on one medication that can raise the potassium levels in your body so can you take to much?
I sure hope not.Gives me a reason to buy a banana cream pie My husband hates bananas so I could have it all to myself. LOL

Deanne

 
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