[alie]

I was wondering if anyone had any suggestions as to the medication problems I am having. I take 150 mg of Lyrica BID 2.5mg of Methadone TID Amitriptyline 10-30mg At nite and Diluadid 2-4 mg prn. I just went back to work and am finding it very hard to stay awake all day. Do all RSD sufferers take this much medication. I have had only one nerve block I had some success with it, My dr. wants to wait and see how much pain relief I can get from it before he does another one. Does this sound right to anyone? I am still not walking properly I am either walking with a crutch or I walk in a boot. Please someone respond I need answers and I feel like I can't talk to my doctor. Thank you

[icesk8er]

I've been on the majority of the medications that you have listed along with others like Loratab, Oxycontin, Neurontin, and several others. I no longer take any nerve or pain medications because they make school so much harder for me and do not do much to even help take the edge off of my pain. The only medications that I currently take for my RSD is Ambein CR to help with sleep, and I use Lidoderm (Lidocaine) patches to help with flare ups, and Lidocaine topical solution which I put in a spray bottle and spray on my leg. Most doctors leave a few weeks inbetween blocks and then "build" them on each other with each block being a few weeks or so apart. Good luck!

[KELLYP]

FIRST OF ALL YOU NEEDE TO MAKE YOUR DOCTOR SIT AND LISTEN TO YOU. HE IS NOT GOD AND WITHOUT US PATIENTS HE WOULD NOT BE IN PRACTICE. ALL I REALLY CAN SAY IS NO MATTER HOW IT HAS BEEN PRESCRIBED TO ME IN THE PAST, MEDICATIONS, I HAVE HAD TO PLAY WITH IT MAYSELF TO MAKE IT WORK FOR ME. LIKE I HAVE FOUND LATELY IF I TAKE NORCO 10/325 WITH 75MG OF LYRICA I WILL FALL ASLEEP ALMOST INSTANTLY. ON THE OTHER HAND IF I TAKE THE SAME MEDICATIONS WITH A OVER THE COUNTER (FROM WALMART) HORMONE I GET ALMOST NO EFFECT FROM THE MEDICATIONS. NO ONE CAN TELL ME WHY. I NEED TO TAKE ALL THE MEDICATIONS BUT YOU NEED TO MAKE IT WORK FOR YOU. I AM NOT A DOCTOR OR I AM TELLING YOU WHAT TO DO I AM ONLY TELLING WHAT KIND OF STUFF AND ACTIONS HAVE WORKED OR ME. BEST OF LUCK.
KELLY

[Susanchad]

First of all, the reason that you have trouble walking, is because of the nerve block.
Nerve blocks have been known to ruin a person with neurological disorders. I had
one that caused the RSD to spread at a faster rate... Most people dont see a stage
four rsd, but I did....DO NOT get any nerve blocks or nerve strippings. Doctors don't
know as much about rsds as we do.... But they will always claim they do... Who knows
their body and pain better than we do???? Can you say that Dr. do??? I have a few questions,
1. first question.... Do you take your medicine daily??? (minus the Dilaudid) I understand that is as needed.. If you do....and you sleep to much.... wean your self down to as needed on all your meds and get up and walk around through all the pain without the boot and cane..and rebuild muscle faster then the cell rebuilding on their own. My husband made a special nerve cream that is a topical cream that stimulates my nerves and helps the pain so i can move around easier..I would rather use a topical rub... then pain meds anyday. my Neurologist told me 6 years ago that i would be wheelchair bound within 2 years......I walk on my own and have bad days here and there but not near as many as i had before.... I take a amitriptyline as needed for sleep and nerve pain. when nothing else helps... I have created a bath salt soak for the bath tub that stimulates my nerves and use video games as pain management techniques....the more I slept before the more i would atrophy and hurt worse... so work thru the pain and get yourself stronger.... [moderator note: e-mail address has been removed]

2. second question.... Where was your brunt trauma at???? my ex husband severed 90% of my autonomic nervous collumn...on the left side.... i had to breathe manually, and pump my heart manually as well.....plus numerous broken bones all over my body...crushed my left cheek bone and had to have it rebuilt. so as i said before i am stage 4 and yes i hurt but i keep myself busy as much as possible and even when i don't want to do anything i force myself to get up and move around.
Even tho i hurt , i don't hurt near as bad as i did a few years ago....

So if you want any advice or have any questions of me please don't hesitate to e-mail me... my husband and I have done alot of research on what helps pain.....i don't have medical insurance so i had to figure out another way to fight the pain.... I do get disability... but make to much to get medical coverage...?!?!?!?!.....i don't know how 675.00 is to much, to get medical insurance....
Methadone sometimes help me in the past but i haven't had it or dilaudid in over a year now and take a amitriptyline only about 5 to 8 times a month now..... and with our new muscle and pain rubs... and bath salts we created i feel so much better and now am sleeping when i do lay down to rest. So let me give you some hope.... you can have pain free days....here and there....

Susan and Chad [moderator note: e-mail address has been removed]

[perceypor]

Please do not stop any of your medications based on my response, I am not a medical doctor. However, I have had RSD for 20 years now and the alot of those meds actually make it worse. How did the nerve block make you feel? My life/pain actually got better once I stopped a lot of those meds. I of course still take a few, but, most of my therapy consists of 10-15 or more nerve blocks ever 5-8 weeks. The first day or so, you enjoy the numbness, the next few days are tough while the meds kick in. Then I am off for 3 weeks, exactly. Of course, I still take pain meds, but, only one. My blocks are the key to controlling my pain. I am being treated face/neck/head/shoulder/back.

Sabrina

[Susanchad]

You'll be sorry taking the nerve block treatments.... I had some and i lost all feeling in my left arm.... If im not careful, I can get 3rd and fourth degree burns.... my left side of my body has no feeling and serious muscle wasting as a result of the nerve blocks per my dr.

[perceypor]

Here again, trying to treat this thing is crazy! I know the stellate gangloin blocks
definiately makes RSD worse. However, the nerve blocks are the only thing that helps me and my RSD is systemic. If you get to the right medical team, one who knows what they are doing, the
right blocks in the right place will make a difference.

Like I said earlier, I take loads of blocks every 5-6 weeks. There is a big difference when I go past 7 weeks. I can no longer control the pain on my own. Once I get the shots, immediate relief due to the numbness. That really takes that edge off. Now, know that after the numbness, you will hurt. They will cause you to hurt for about 3-4 days until the meds kick in. After that, I have 3 GOOD weeks where I can control my pain and enjoy life a little. I can tell when the blocks are wearing off. I have been doing the blocks faithfully since 8/04 and they are working. Remember, I am not talking about
the gangloin blocks, they make things worse. I am talking about real nerve blocks, trigger points.!

Sabrina

[perceypor]

Susanchad, I am so sorry you had problems with the blocks. I will almost be that they were not administered correctly and they were probably "Gangloin Blocks" You are correct, these specific blocks do make it worse. They are not to help, but to diagnose. You are suppossed to have the exact reaction that we have all had, regardless of the damage, in order to diagnose. Really, they don't know enough about any of it. When I took my gangloins, they destroyed my hand, it will never be the same. I have been receiving "nerve blocks", the right ones in the right places by the right people since 8/04 - and they have been the KEY to controlling my pain. My RSD is full body, as well as systemic and the blocks really help. Research the different blocks for yourself, if you haven't. Everything you read about sgb's will tell you they are only diagnostic in nature. If you already have RSD, they will hurt you more. I get so much relief from my blocks and I know a lot of others do as well, I just can't imagine what happened with you, unless they were SGB's.

My journey is all documented if you want any further info: [moderator note: e-mail address has been removed]

[tlund]

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[ewrace]

I take methidone,noritriptilyne,clonazapam,tizanade,lyrica,oxicodone. I don''t find they work much either.I have a child so I can't fall asleep either.I just had my meds changed because I was on 5 that were setitives.Reasearch your meds.Find out which ones are setitives and adjust them.I have had rsd for 5 years now.
The blocks did not work for me either.I found it only made the pain that much worse.I recently had the trial for the stimulator.Once again made the pain worse and I have to go monday to have my meds changed again.
I have tried so hard to get this nationally recognized.If the nation knew more about it maybe there could be more research done.Insurance companies do not want to listen,workers comp just drags it out.Now I went from 1 limb in 03 to all four and my back.Some days I can't even get up to walk.
If it weren't for my son,I know I would have just gone to sleep and not wake up.I am not that selfish and would never do that to him.
The hard part is going out in the world pretending you are normal.People don't want to hear about cronic pain so you just start bottling it up.I allow myself a melt down a week for about 10 minutes.I don't have much support because no one understand the degree unless you have rsd.
My son is 8 and he supports me more then anyone.We are very close.I do not want him worring and having to lose his childhood for me.I am very careful to keep his life as normal as possible.Some days I just can't mustard up the strength.My husband works at night so he sleeps in the day which leaves me to do everything.I feel very alone.I feel hopeless.I know you are suppose to keep your chin up and go on,but it is so hard when it just spreads and nothing works.
Well I could go on forever.Thanks for listnening.Hope you are successful with your meds.