Lycra? Methadone?

[Sandel]

Hi there..

I saw a chronic pain specialist yesterday and she said that she felt I should be weaned off the Gabipentin and put on Lycra, she also said that she felt that Methadone might be a good alternative to the Tramacet that does not work for me. I do not do well on the morphines as I get a slight allergic reaction and cannot handle the nausia.

I plan on doing some research but thought you guys would have some good insite into these meds with your experiences. please and thank you very much.

I hope the pain levels are low for ya'all,
Hugs,
Sandra

[Cutiepie]

Hi Sandra,
I have not used Lyrica myself for my RSD, but my husband used it for the nerve pain from a herniated cervical disk. It helped him very much. I'm not sure if this help translates over to RSD pain, but I thought I would pass the info along anyway.

I can sympathize with you - I cannot take narcotics either - I get nauseous and have even vomitted. Not fun.

I hope you find relief!

Take care,
Julie

[Sandel]

Hi Julie thanks for your reply, I have one concern over starting this med and that is that it will make me gain weight, that doesent sound like such a price to pay except that my origional RSD is in my right ankle and man a few extra pounds realy makes a diffrence both legs are very.. hmm...:rolleyes: insecure? rattly a few extra pounds means another block less.. yah its a biggy for me.

Nice to see you again an I hope things are well for you an yours..
I feel so distanced from everything these days.. thinkin its mabie the seasonal blues..
Take care bud,
Sandra

[rainbow422@aol.com]

Hi Sandra,

I am taking the Lyrica for RSD and it helps quite a bit. Lucky for me there has also been no major weight gain. Hope it helps you, but watch for reactions when you go on it. My doctor warned that dizzyness is a bad one and that I should go off it right away if I had any. I have a link I will pass you. I did find it makes me quite tired and when I went on and any dose changes, my eyes were extremely sensitive to light. Just an FYI. Sorry for all the typo's but my hands are hurtin pretty bad tonight.

http://www.mayoclinic.com/health/drug-information/DR500647

Gentle Hugs,
:D
Rain

[Cutiepie]

Hi Sandra,
It's nice to see you, too! Fortunately I don't need to come here as often as I used to as my RSD is doing pretty well overall. I have flare ups - especially with this tempermental weather, but I'm working more and more so I have less personal time to spend on the computer. But I miss my old friends so I try to peek in once in awhile.

I know what you mean about the seasonal blues. I battle that, too. My doctor put me on a mood stabilizer, Lamictal, which can also help with nerve pain. Maybe that's part of why I'm doing better.

By the way, my husband did not have any weight gain while on the Lyrica.

Take care,
Julie

[kathy d]

Dear Sandel,
Hi Sandy. Hope you are feeling a bit better. I pray summer will be here soon because I don't know if I can take this cold weather any longer...I don't know how you do it in Canada...brrrrrrrrr. I have tried Lyrica, as well as the others you have mentioned and dizziness is definately a problem as well as vomiting and nausea too. I have tried so many different ones to no avail.

I have not tried Methadone either and wonder how it works compared to OxyContin, Fentanyl, & Morphine [Listen to me I sound like a Pharmacist]! I have heard on the TV that Methadone I guess is the new OxyContin since OxyContin had gotten such a bad wrap so the new med is Methadone I guess.

You just have to keep trying to find out, by trial and error, which meds work for you and which don't work. It can be frustrating but RSD can affect everyone differently & so can the meds. I know I tried a blood pressure medicine a neurologist had me try back in Oct 06 called Clonidine and it really seemed to deaden the nerve ending pain. However, after about a week or so I began seeing visions that scared the crap out of me and were very demonic and freaked me out...this while I was awake at night. So, I had to stop taking them and the visions stopped. The med worked great for me but I couldn't handle the visions. I found out recently that Clonidine is one of the meds they give you when you have the Ketamine IV done to PREVENT hallucinations. I guess I won't let them give me that med huh? Just hang in there and keep trying until you get the right med and the right dose. I have had to increase my Fentanyl to every other day and it still does not seem to be working. I am going to have to call my doctor next week and see what else I can do to rid me of some more pain. I don't think I have ever taken any med within the last two years that has taken most of the pain away. RSD is just a tough thing to overcome.

How have you been doing with your heart? I know you were having problems before with it. I'm sorry if I didn't read a previous message and I am making you repeat yourself but my pain has been so bad that I have not been able to get online for very long.

I will keep you as well as all my other RSDers in my prayers each night.
Kathy d.

[DavidC642]

My pain doctor had told me that Methadone was the best pain medicine for RSD when he prescribed it for me a few years ago. I take the lowest possible dose that I can get by with, and it has worked for me far better than any other medication that I had tried. It doesn't take the pain completely away, but it is bearable. Maybe if I were willing to try a higher dose, I could be pain free. However, I think I would be comatose as I don't do well on any medications.

[Sandel]

I am now on 75 mg lyrica twice daily, it helps similar to gabipentin.. had some surface burning for the firast week off gabipentin then I think the Lyrica took over but I think I need it higher cause I am still burning sometimes. And I burn everywhere now.

Funny thing... well not funny haw haw funny odd, a little disorientation about an hr after taking Lyrica sometimes lasts usualy gone with distractions pretty quick though.

Hearts still acting up some doc put me on long acting atavan and flexeral to relax those muscles. It helps some but man I hate feeling like my chest is a deepfreezer and my heart is fridgid.. lol crampin heart muscles is not a picknic and I am used to pain.. the atavan (under toung or long lasting) realy helps the chest settle thank goodness Kathy, thanks for asking hon. I have been thinking of you and your son alot.

So WorksafeBC (WBC) has just discontinued those two drugs and also canceled the tramacet cause its an opiate!!?. They also cancelled my Trazadone:eek: saying it was only for a one year trial? Actualy it was to replace the Amitriptyline because I had gained 30 lbs on it. An it was workin for me (a keeper) they are nasty people who do not understand pain and seem to live to make my life as dificult as possible. Thats their jobs I supose.

Take care an hugs all around,
Sandra

[kathy d]

Sandel,
I agree with your understanding of workers comp ins. They are the worst! I keep having problems with them month after month with my medicines. They say it is straightened out and then the following month the same problems. It is a full-time job just trying to get the insurances all straightened out. Whew!

I am now using a cream with Ketamine, Clonidine, and Gabapentin. It is EXTREMELY strong and I've been having severe dizziness for about a month now that has been progressing each day. I can't sit up for long periods of time and I'm exhausted ALL the time. I saw the doctor yesterday and she wants me to cut the dose alot to see if I can stay on it another month. Oh, did I mention the visions of things running around on the floor I saw last week...like some kind of cat running in front of me. It was bad and I was freaked out but I had problems with Clonidine and visions/hallucinations when I took the pill. Amazing. It feels like now my body is shutting down and doesn't even want to work. I feel terrible every day on top of the always feeling terrible from the full-body RSD and other complications. Like you said..."I can't imagine what would be worse than this!!!" I don't even want to think about it!!! Take care my friend.
Kathy d.

[Sandel]

It is often that I find I am not sure what the symptoms are from, the RSD being as it is acting so automomicly from the start.. or the meds I am on to help controll other symptoms *sigh*.

Kathy I have been meaning to ask you if your RSD has been labeled a certain type or not.. mine has not but I thought as you were involved with way more knowlegable doc's they may have Dx'ed your type of RSD.. It seems to me that our RSD progressions were similar right from the start (timelines of spread and organ involvement etc) And a very similar crush injury, damn wheels ay.

Hey can they make the cream with just less Clondine mabie? Or substitute it?

I myself would nix the cream if the symptoms progress any further, actualy before now (but as you know we all tolerate things difrently). Does it have a cumulative effect that the doc would want you to stay on it longer?

[JJones]

Hi - I'm new to the forum and was diagnosed with RSD/CRPS in '99 and just diagnosed with small fiber sensory Peripheral Neuropathy this year. I am on both Lyrica and Methadone (along with Cymbalta, Topamax, Amitriptaline, Morphine Immediate Release). My lyrica dose was just upped from 75mg 2x a day to 3x a day. I have found it to be effective for my nerve pain without significant side effects for me. Of course you will have to judge the side effects for yourself as everyone responds differently.

Methadone has been a lifesaver for me. I was taken through all the pain meds, one by one and none did anything to touch my pain. Methadone does not leave me pain free as I still have debilitating pain episodes that leave me speechless and breathless in pain and on the floor. But it has been the best day-to-day pain reliever for me. I'm sure I am dependent upon the drug now but I consider that a small price to pay to have at least some ability to function during the day.

Just thought I'd put in my 2-cents for you in case it is helpful. Best of luck in getting you pain under control. I know how hard it can be. I'm still struggling day to day.