Hi Friends, I really need some help here. Since I have been on my heart med that has been new to me this summer, I am having a problem with my right leg feeling ice cold and ever so painful. Last night I was up until after 4AM (I know lots of us are) but it is kind of unusual for me. My RSD is allowed for my left arm only despite having to have bone grafts taken from both hips to put the arm back together and later fuse it. Today it has been over 90 degrees here and I am wrapped in an quilt with the heating pad on high to try to get it to feel warm. My leg is not swollen any more than usual and sweats like it feels they 90 degrees, but remains cold to the touch. I am about at my wits end here. I told the heart doc about this and he said to continue to take the med and that sometimes that this is just a side effect. After a month, I would hope to be over the side effects.

I really need to pull back on the pain meds as my college starts in a week. I did go off of the Avinza, and discovered that it was not helping much at all.

Please, please send some help my way. My stress level is way high right now with another WC hearing scheduled on the 15th and with school starting ( major memory issues) along with family issues.

[QUOTE=Lisa in Ohio;690150]Hi Friends, I really need some help here. Since I have been on my heart med that has been new to me this summer, I am having a problem with my right leg feeling ice cold and ever so painful. Last night I was up until after 4AM (I know lots of us are) but it is kind of unusual for me. My RSD is allowed for my left arm only despite having to have bone grafts taken from both hips to put the arm back together and later fuse it. Today it has been over 90 degrees here and I am wrapped in an quilt with the heating pad on high to try to get it to feel warm. My leg is not swollen any more than usual and sweats like it feels they 90 degrees, but remains cold to the touch. I am about at my wits end here. I told the heart doc about this and he said to continue to take the med and that sometimes that this is just a side effect. After a month, I would hope to be over the side effects.

I really need to pull back on the pain meds as my college starts in a week. I did go off of the Avinza, and discovered that it was not helping much at all.

Please, please send some help my way. My stress level is way high right now with another WC hearing scheduled on the 15th and with school starting ( major memory issues) along with family issues. [/QUOTE
Hi Lisa, I'm so sorry you are going thru the heartbreak of RSD. The website: rsdrx.com puzzles list is a great source of information on Rsd. Dr. Hooshmand practiced 40 years. I'm sure you are aware that RSD is an autonomic condition: 3 major areas- affects body temperature, both hot and cold. involuntary organs-heart, lungs, etc. so we have high blood pressure from the sympathetic nervous system and low blood pressure from the parasympathetic nervous system. and the immune system. Thus the frustration not having control over these things. Most people's bodies control body temperature to be normal, but us-we got hot to cold in a heart beat.
Same with blood pressure. Many of us have passed out from a sudden loss in blood pressure.
Lisa, I have been away a couple months or longer, so don't really know your history. Could it be spreading of RSD. Is this the first symptoms of RSD in the leg?
Something that has helped me lower pain meds is taking anti-anxiety meds. Do you take any? Anxiety is a huge part of our RSD. The memory issues are because the Limbic part of the brain is affected by RSD. I don't know of anything to help is this area. I know sleep is imperative to have the best life possible. I used to take Ambien CR, but totally quite working and I didn't get to sleep till like 5-6 am. My Dr. added me to a trial study for 200 people for serorquel XR and amazingly I started sleeping 10 hrs. a night. I take 150 mg. now instead of the 300 mg I began with. The lighter one worked well.
What a challenge college must be. What are you majoring in? My daughter had just started college when I got RSD. She used to take me to therapy, and study in the waiting room. Thankfully I had a couple remissions by the time she graduated and got married.
Take care, and please let us know how you are doing. Your friend, loretta

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Lisa, please, first understand, that I'm NOT disagreeing with Loretta.
Please, get what you can from all of us?

Of course, this is a terrible disease. We all know this. Our doctors, are Always under suspicion. (I thank the Good Lord, that I've been with my team for more than 20 Years!). Although I'm asked to find a 'new family doc, that they might work with".....
Anyway,
I can rattle off all sorts of really sick, Dx's, and sich, but, I won't. Because why? Because Ya'll know them!
And, I won't waste your time. I feel everything, that ya'll do!
So, I won't.

Any good, RSD Neuro, knows our story. (Am I Wrong?) nope.


So, While I cannot send you a 'True' painkiller.
I can only tell you what I go through after 27 years of this Pain in the ***.

I had a wonderful weekend, this one past. Two days, one each, with a new (old) friend, then the next, with a not so 'old' friend.
Saturday, I got up, (and REALLY PUSHED MYSELF to) go out, given a ride, with my old childhood friend, to eat some blue tip crabs! couple beers too! Yee haa!
Came back to my stupid, hated apartment, because my wife stole my home from me, and we watched a movie. Cool. Right?
Sunday,
another great friend, came by, we went out to buy some lite groceries, and came back to watch another movie.
GREAT!

How much more could I ask for?
You don't know!

I used to own TWO business's.
When I could entertain my clientele, and I actually got to Play guitar and sing for them!
Along with an entire Band!
Yes, those were the days!

I cannot sit and cry about those days any longer, I did that.......

But, I WILL FIGHT for ta get that all back!
My lawyers all F'd UP!
I had 5 mil, in personal/business insurance, in other words, 5 mil, that covered me, and several more, that covered my loses.
A Lawyer stole my 42 Acre Property/business, while he let my wife steal my P&H business, in Philly!

Think I'm gonna let this rest?
Nah.

I'm now stuck in a Legal Malpractice, or as they like to call it, 'Professional Malpractice' type of crime.

Dammit, so many of these attorney's are afraid of the other's diploma's!!!!
I CAN'T STAND IT!

I wish you all the best!

Please, keep in touch with me?
We seem to be going through the same thing together!

And, it's the worst!!
We need to support one another!

All my love!


Pete

xo

During a 5 month period of trigger point injection therapy (3 1/2 to 4 1/2 hours per day with 1 to 3 therapists working on me at one time - 5 days per week), we took constant temperature measurements of my leg during each 30 minute session. We routinely found it to be anywhere from 5 degrees hotter or 5 degrees colder than my normal body temp. These huge temp swings could change in less than 30 minutes, thus we're talking about a 10 degree change in temp here. This is a huge swing! While it's annoying as all get out and does cause real discomfort, it's also a very common symptom of RSD. Try and not panic, but just it accept it as being one more of those things that you'll learn how to live with.

One thing I did notice as my temps started up these wild swings was that the circulation did diminished rapidly in the leg as well thus it went from dark red to purple and black in color. I wish I could tell you that this is no big deal, but in my case it was the prelude to the RSD progressing faster and further.

I sincerely wish you all the best. Now please make sure that your doctors start keeping a closer eye on the circulation in your limb(s). We're talking about things like DVT and such can quickly follow in some cases. Bob.

Hi Lisa,

How is your walking? Are you able to get around without too much pain and difficulty? If possible, I would suggest moving around as often as you can, to get your circulation going. I suffered spread to my right leg last summer. I think Lidocaine infusions last summer helped the burn and swelling quite a bit. But I also think that my leg has been somewhat OK because I continue to move as much as I can - I walk several miles a day most days. There were some days that the walking was pretty awful, and I didn't get very far. But I still did it. My original injury was to my right shoulder.

I also had 2 doppler ultrasounds last summer when my leg was really swollen and discolored to make sure there was no DVT. Just to be on the safe side. I have gross varicosities in my right leg from the RSD. It also gets freezing cold, especially in the winter, and I used to wrap it in a heating pad all the time.

The best of luck to you. Sandy


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I totally understand the temperature difference with you legs.. My right leg is always much colder to the touch than my left, right being my worst RSD leg and side.. and my pain level remains the same.. No break for this chick.. I cover my leg up best I can without causing pain from my snuggly blanket.. it is an RSD flukey thing.. I try to keep walking (Iam an ugly walker).. best I can but I have a very painful gait..but it is important to push thru the pain to achieve optimum results..and use...

I also have a heart issue which for that I can take medicine but this I feel is totally our RSD friend..

My heart goes out to you, Lisa..I am sorry for your troubles... hang right in there cuz weeze we got yur back here...

Hugz to you, my friend.

Kathy

Thanks to all. Sandy, I do try to walk and am still able to take care of my house to a certain degree. I can't walk very far unless I take the heart meds due to the tachycardia and irregular heartbeat. Last summer I would try to walk about three miles a day 4-5 days a week, so I understand what you mean.

Loretta, I do not take any anti-anxiety meds as WC will not cover these drugs, nor will my regular insurance because the problem is related to the RSD (vicious circle). I have visited the site you suggested and it is very helpful. I am studying business management with emphasis in human resources and only have two quarters left. I can appreciate about your daughter studying during your appointments as I always have my college bag with me where ever I go.

Aint, I am so glad you had a good weekend. You deserved it. I too, have been on the divorce route. I left my husband after many years of abuse after I fond out that he had be sexually abusing my daughter. I walked out of the house with our clothes, the kids toys, and a few special items that I had left that he hadn't destroyed. We started over with what mattered most, each other. It was really hard but now I almost have my house paid for and have put both kids through college and grad school. ( now mamma has to get smart). I really hope that you can still play guitar and sing. I have always said that my music is my cheap therapy. I used to be a really good pianist. I think that that is what helped me keep mobility in my hand and fingers when the accident happened and RSD set in. I am still able to play some but not at the level that I was able to play before. It is really a loss. Pete, I hope your good feelings from this weekend continue through this week.

Bob, thanks on the heads up and letting me know what look out for, I wouldn't have thought about some of those things.

Kathy, keep that leg cozy. I really think that this is related to the heart medicine. I quit taking it as of Monday, and while the leg is still cooler, I am not sitting here with the tears running down my face. I have twice told the cardiologist about this and he thinks that it couldn't be that bad. I figure is I have the Big One and check out, that would be better than dealing with all of this.

Again thanks to all, Love Lisa

You, Lisa..ain't checkin out..We need you here with us!! Weeze family!!!

Love, Kathy

Dear Lisa,

I read your post last night and left the forum astonished. First and foremost, after all you have been through with your husband, children, (I do hope your daughter has made peace with that, I am not a hater, but there is no room in my understanding for that type of behavior). You picked up and left with your children, you were also abused, and still managed to pick yourself up, manage a new life, put two children through school and paid off your house and dealt with your own physical ailments!! You are still attempting to improve your life and trust me being a mother of three that job is never done. Girl you need to pat yourself on the shoulder and be proud of what you have done and the accomplishments that you have made as a single parent! I am so impressed and you are a perfect example of not allowing any obstacles (including rsd) to get in the way of what you want. Dealing with this pain everyday is no cake walk, sometimes we just get tired and that is ok. You sound a bit overwhelmed right now and anxious, I agree with Loretta on the anxiety, and most of these medications are fairly cheap, I believe they qualify for the four dollar copay at Walmart. They truly have helped my pain tremendously. As far as the cold leg, yes that is very uncomfortable to say the least but is part of the disease. I, like KS, use my heating pad even in the summer, it too helps the pain and circulation. I wish you all of the best my friend, you are a very strong lady, your just a bit nervous about your upcoming committements, and we RSDers fear committements because our days are so unpredictable. Best of luck with your classes, you will do great!!! God Bless You and Your Family!!

Jeanie