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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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Botox gone bad
Jul 25, 2006
This is long, but I want to explain what has happened ....

Just a heads up for anyone thinking of trying botox injections.

The third week of June, I had two vials of botox injected into my RSD shoulder, a couple places in my upper arm muscle, my scapula, my thorasic area (hope I have that term right) and my upper back and shoulder area all across over to my other shoulder. I have had very tight muscles in my upper back and shoulders for several years prior to RSD, and now, with the RSD in my left shoulder and scapula and upper arm, it has become really really tight, and the muscle spasms are unreal. My RSD is worse in my left side, where the most botox was injected, but has spread across my upper back to my right side... so where he injected has RSD to some degree. The most botox went into the worst areas.

Since I did ok with trigger point injections a few months back, my pain management doctor thought he would send me to a very good neuro for the botox, hoping that this would release what was left of a half frozen shoulder, and give me my movement back, reduce my pain and allow me to get more from occupational therapy. I knew I was taking a chance, and that the pain might get a bit worse before getting better. I thought it would be worse for a week or maybe two. I had no idea it might become horribly worse for months.

I was VERY concerned about the EMG used in the needle for the botox placement. I had RSD in my foot before, and had an EMG nerve test done in my foot and calf, and the pain and spasms it caused lasted over a month. But, he assured me that this EMG was not as strong, would not be a problem. During the actual injections, it was not bad at all. I was thinking.. ok, this might be alright after all. They said use some moist heat, you might feel a bit of heaviness for a week or so, maybe some extra soreness for a few days. The Neuro knew about RSD, and said if you have any problems, call me.

About a day an a half later, I felt terrible. Of course, this was a Saturday morning. I had a regular appt. with my pain doc on Monday. He could not believe what he saw. I could barely move by then without crying. He normally gives me 10 vicoden a month (I only use them for the very worst days- normally I try to get by without narcotics -it is not easy, but I get by) ... but when he saw me, he wrote for 2 every 4-6 hours and said call me in 10 days if you need more.... and call the neuro if you are not better in 2 weeks. So, I used all that vicoden, and called for the refill and called the neuro in 2 weeks... cause I am getting worse every day. By this time, I can't lift a pop can without working up my nerve. I am getting to work, but I don't know why they didn't send me home, because I was not productive... crying all my shift.... I am SO lucky my drive to work is almost all straight lines because turning the wheel was agony.... SO I ask to talk to the doc... the nurse says.. well some soreness is to be expected... everyone gets it. Just take some tylenol. I said, you don't understand.. I have RSD and the doc said call him if I have problems. She said,now we use botox to treat repetitive stress disorder all the time, and botox does not cause pain when used for that. I said that is NOT what I have, it's Reflex Symp. Dyst. and she says, well, I have never heard of that. She says we can call in a small muscle relaxer for you. I said look, I take baclofen 3 times a day. She said, isn't that an antibiotic? I said, the doctor said I was to talk to HIM if I had problems. She said now we can't disturb him for everyone who says they are a little sore from the injections. Soreness is a side effect. I said you don't get it. I live in a LARGE amount of pain every day. This is NOT a little soreness. This is MAJOR pain. Obviously, I am not going to get anywhere with this. When I come in for the recheck, I will be discussing this with the Doctor. She said "Fine."

In the mean time, I continue to get worse. My pain doctor had turned me back to my family doctor, as I was stablized and was ready to stop seeing him.... so I went to see her. She was LIVID about my treatment by the neuro office. She said she was going to write them a letter. She put me on duragesic patch. Started with 25's for 6 days, then up to 50s.. been on that for 6 days now, and it's better. At least I am not crying all the time. Still cannot tolerate my occupational therapy stuff. I go back to see her end of this week, to see if she wants to bump up to 75's. We'll continue this until I go back to the neuro for the recheck in a couple weeks and see what he says... I HOPE and pray that this will wear off when the botox is supposed to wear off at 3 months.... and that this did not put the RSD in some sort of hypersensitive state that is going to last forever.

It's not just pain. My muscles are jumping. As long as I don't move, the muscles will stop twitching big time, down to little vibrations like... but if I try my therapy stretches, or am doing something like trying to raise my arm to wash... my muscles start jumping, and you can see them moving. LIke there is a big TENS unit connected to them jerking them. My massage therapist says it's like I have the worst case of Restless leg syndrome she has ever seen in those muscles now.

However, this is so strange... the botox has worked a little... the muscles are looser, as long as I don't move. LOL.... If I do the meditation for pain.... where I really concentrate on relax, relax... calm... etc while the massage therapist works... she can get things to move more than they ever have... but the intensity of pain is SO MUCH worse than it has ever been. It is just unbelievable.

I have wanted to type this all out to you all for so long, but until these 50 duragesics kicked in... I just could not do it.

Now if I could just stand the darn patches! They bother my skin something awful... but I am going to put up with it!!!!!! They are a Godsend!!!!!!!! And trying to find a place to put them where they don't want to fall off... I have to put large bandaids over them just to keep them on, then I am somewhat allergic, to the adhesive on the bandaids... it's just a joy having RSD!


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