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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-25-2006, 07:50 PM   #1
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daylilyfan HB User
botox gone bad

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!

Jules

 
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Old 07-25-2006, 11:11 PM   #2
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Skooze HB User
Re: botox gone bad

Wow Jules!

Sorry to hear about the botox. I wonder if anyone else out there has had that reaction??? i I read about it somewhere, but never actually heard of anyone having it done for RSD. I wish I could help you. I've had frozen shoulder in my left from RSD, but I can't even begin to imagine. It must have hit the wrong nerve. Sounds like my experience with the stellegate nerve blocs. I could feel that dr. stick that needle in and watched him and screamed so loud, I swore the whole hospital heard me, including those int the morgue lol. This dr. hit a nerve and just thinking about it, I can relive that pain. Kinda like child birth. At least they got you on some better pain meds. Have they tried morphine yet? That's waht managed my pain the best. I'm on 180 mgs a day. It's extended release, and I take percs, 5 a day for breakthrough pain. Sounds like you might be headed in that direction. I hope others read your post and can offer you some "From Experience" replys. My prayeres are with you. Aloha Skooze

 
Old 07-26-2006, 04:56 PM   #3
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Smile Re: botox gone bad

Hi Jules,

I'm so sorry for what you've been through. I hope you continue to see some progress from that horrible experience you went through so that at least you can say it was "semi-worth it." Feel better.

Sharon

 
Old 07-26-2006, 06:53 PM   #4
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daylilyfan HB User
Re: botox gone bad

Thanks to you both...

I was hoping someone here had done botox since having RSD. I did research it before, and had read positive responses to it. Otherwise, I would not have tried it. I think I must have had some sort of strange reaction. Won't know until I see the Neuro, and then I am not sure he will be up front about it. You know how they can be about covering their ... ah.... tracks.

He seemed to really think this was going to help me SO much... I was really very hopeful. Now I am just wishing the weeks would go by till the 3 months passes so I can tell if this is going to go away or if I am stuck like this.

Jules

 
Old 07-28-2006, 10:13 PM   #5
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Skooze HB User
Re: botox gone bad

Hey Jules!

I just had a thought. I had an allergic reaction to cortizone since RSD. Everytime they tried injecting me with it, it hurt so bad, the RSD just flared up. The dr. kept injecting in the left RSD shoulder, and the 3rd shot, my left breast implant exploded. They only kept doing the shots casue wc ordered them. All of my dr's said that they never have heard of something like that happening.
Only to us guenia pigs who are so desperate to try anything. ..
But I was wondering if Botox and Cortizone have some kind of similar chemical makeup--due to the numbing affect--that can have an adverse reaction that aggrevates the RSD??? Geez I'd hate to see you have to suffer for 3 more months to see if the side effects remain! Maybe ask your dr. about the 2 drugs and if there is any similiarites. OR > >> > > maybe we just shouldn't have any injections. PERIOD. I have heard from others on this site how they got RSD from just a simple shot. Yes that is when I closed my wc case. I told my last IME that I wasn't a lab rat. LOL. I'm curious if you do find out something from your dr. will you let me know?? Thanks, Aloha Skooze

 
Old 07-31-2006, 04:08 PM   #6
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daylilyfan HB User
Re: botox gone bad

Skooze,
I got back to the botox neuro on Friday.

I will come back here and let you know what he says.

I don't think that the botox and cortizone have anything in common, but perhaps a drug that they inject WITH it is common. It's something to consider.

I did have the round of trigger point injections a few months earlier, without any problems, just minimal soreness. If I had not had that without problems, I would not have tried this.

You can bet I am going to pin down that neuro about just how many people with RSD he has injected, and if any other people, RSD or not have had this reaction.

Biggest thing I am going to pin them down about, is why the nurse (if she was a nurse) did not take me seriously when I called.

This has reaction has been so strange. I am thankful every day for a family doc that has compassion and is not afraid to script for the duragesic. It's been like a miracle. Does not cover it all, but it certainly helps.

Jules

 
Old 08-11-2006, 12:25 AM   #7
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djoyv HB User
Re: botox gone bad

Usng botox in this manner is completely 'off label'. I have heard plenty of horror stories. Botox is not chemically similar to cortizone, it is botulism toxin, a poison. I have tumors along the nerves in my brachial plexus. I was told by a neurosurgeon that he was the best there is, that the tumors are impossible to get to, if he couldn't remove them, it couldn't be done, thus, my pain must not be related to these tumors. I must have RSD. ??? His suggestion? Implant a botox pump. The thing is, I reminded him, was that these very nerves included my diaphrmatic nerves, which control breathing. If botox were to 'kill' them, wouldn't I turn blue? He just stared at me for awhile, finally said, could be...and then explained that the proceedure was experimental and thus my insurance wouldn't cover the $6,000. cost, make sure to bring $$$. He'd have to catch me first.
Best of luck to you.

d.

 
Old 08-11-2006, 08:42 AM   #8
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Re: botox gone bad

Just scanning the board and saw your description of the injections....it has also left me wondering if there is a connection with the RSD and ANY injections. I was recently hospitalized for Pancreatitus (which is probably also related to the RSD or crummy meds I have to take) and they were putting pain meds in an IV. I screamed all night every time they put more in. I kept explaining to them that it was a 10+ unbearable pain and they kept doing it. I have lovely photos of my arm afterwards. It swelled up so bad my skin hurt and bruised from elbow to fingertips. Ever since, I have had swelling in my hand every morning and it has become difficult to type, lift, etc. Maybe Skooze is right, we should just avoid having any injections at all. Kinda makes you afraid to do anything, doesn't it??
Hope you get some answers. Good for you being so aggressive. Go get 'em!!
Take care of you, Mindy

 
Old 08-12-2006, 12:57 PM   #9
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Re: botox gone bad

Well, the Neuro said that he has done thousands of botox injections and never had anyone with the same reactions I have had. He tried to say it was the topamax, but I reminded him I have been on a higher dose than I am now without these issues, and I have also been on it for nearly 5 years, why have problems now? He recommends I stay on the Duragesic patch at the 50 (is it mg?) level for another 8 weeks and give this time to wear off. Also, to take something for inflammation... I get along well with Aleve, so we decided on taking that at prescription strength for about a month, then see how I am doing.

He wants me back at 8 weeks, as he says "I do many more things than just botox injections. I am a regular neurologist, I do more than just injections all day. I am amazed at your spunk and determination and I have a few more things I want to try that I think will help you, so please be sure to come back. But I want to be sure the botox has time to work out of your system first." I did like him, and two of my other doctors think very highly of him, so I guess I will go back.

He said he would not think the botox would react with the RSD like it did - but that anything is possible, and obviously something happened with me. He also told me about not being afraid to be on the duragesic because it would help the RSD to not be in a state of pain like I have been for the year that I have had it and been trying to go without pain medication. He said he felt it was important to
1) be medicated enough that I could do the occupational therapy without a lot of pain.. a little is ok - a lot means I am undermedicated...
2) do the occup. therapy IN THE BEGINNING year to two years especially -with medication... not save the medication for later on. Doing the therapy with the pain meds means getting a lot more stretch, etc out of each session.
3) continue to use all available methods like botox, massage, etc to loosen up the stuck muscles in my shoulder so that I can gain back as much movement as possible in that first two years post my original injury.

After listening to him, I realized he did know more about it than I gave him credit for. When I first went to him, he said he didn't "treat" it, would not take me as an "RSD" patient, but would do the botox. During my exam, I explained how I have searched and searched for a good neuro, physiatrist, pain doc etc who really had an interest in the RSD, but could not find one. Did he know ANYONE???? So maybe he has decided to treat me after all.

I saw him on a Thursday. By the following Wednesday, when I saw my family doctor, who has been my main treating doc for the RSD (and doing good at it!) Well, my family doc already had a letter from him outlining his recommendations. Less than a week after I had been there. That's pretty good, isn't it?

So, botox is bad for me... EMG is BAD BAD BAD for me... he thinks it may have been as bad as the botox.... which I TOLD them when I went there to begin with... but maybe there is something else he has in mind. We will see. At least he is a doc who likes topamax better than Neurontin and lyrica for this. That makes me very happy. I hated Neurontin, and could not take lyrica AT ALL.

Thanks for hanging in here this long.
Jules

 
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