[Jennelle]

My case manager wants me to enter into a pain management program that is an hour away from my home (a drive i can't do myself). It would include a physiatrist, psychologist, anathesologist, ot, pt, and vocational person.... anyone done one of these before? Is it worth leaving my family and having to live there for 4 weeks? I want to cry thinking about leaving home and having to be poked at even more than before.... plus I just talked to the program administrator and he was flabbergasted that my doctor has me on morphine for the pain....should I not be? What do you all take???? Please contact me personally or add on if you have any answers!
Jennelle

[Grammadur]

Originally Posted by Jennelle

My case manager wants me to enter into a pain management program that is an hour away from my home (a drive i can't do myself). It would include a physiatrist, psychologist, anathesologist, ot, pt, and vocational person.... anyone done one of these before? Is it worth leaving my family and having to live there for 4 weeks? I want to cry thinking about leaving home and having to be poked at even more than before.... plus I just talked to the program administrator and he was flabbergasted that my doctor has me on morphine for the pain....should I not be? What do you all take???? Please contact me personally or add on if you have any answers!
Jennelle

Hi Jannelle,

I'm new to rsd so i've never heard of a pain management program where you would stay for 4 weeks. It sounds interesting and might be worth a try - easy for me to say. I take Lyrica 300 mg a day and Flexeril or Darvocet for break through pain. If you decide to do this please let us know how it works. Good luck with your decision.

Sally

[SBOWLING]

Originally Posted by Jennelle

My case manager wants me to enter into a pain management program that is an hour away from my home (a drive i can't do myself). It would include a physiatrist, psychologist, anathesologist, ot, pt, and vocational person.... anyone done one of these before? Is it worth leaving my family and having to live there for 4 weeks? I want to cry thinking about leaving home and having to be poked at even more than before.... plus I just talked to the program administrator and he was flabbergasted that my doctor has me on morphine for the pain....should I not be? What do you all take???? Please contact me personally or add on if you have any answers!

Hello Jennelle,

After reading this post and your other one I can tell you aren't having a good day. When you don't feel well the last thing you need is more stress.When you refer to case manager is this a WC manager? I'm not familiar with WC. You might ask what happens if you say no to this program? Will it stop your benefits? I can tell you at one time or another I have had all of the providers you mentioned on my pain management team. It took us a while to determine what works for me. We have come up with a plan that keeps my pain under control.The same treatments don't work for everyone. No two people have the same nervous system. That's why RSD/CRPS is so difficult to treat. I read a book Living with RSD. There was a brief description on how they came up with the name. There is so much negative history attached to RSD a group of medical professionals got together and changed the name to CRPS. The new name leaves no doubt about what our doctors are facing it is COMPLEX. It was when it was known only as RSD and it still is as CRPS. They couldn't find a treament for it so they changed the name.
I know it would be hard to leave your family. If the four weeks you spend working on a treatment plan works it will be worth it in the long run.
Someone on this forum has a slogan laugh more than you cry. Please, try and do that the best medicine is laughter.
Hang in there and may God bless you soon!
Take care,
Sherrie

[daniella]

Hi. I started a pain day program at Cleveland Clinic for my rsd. It was Mon thru Fri 8 hours a day and I think for a month plus depending on pain level and progress. I was from out of state so I stayed in a hotel near. My pain was too high to complete their program so they sent me to the anestesolgist there for more invasive treatment. If you want you can email me.

[SandyRI]

What are you supposed to get out of the program? And what are you going to do about work and your family? I could never imagine just leaving my home for a month. But I only take percocet, not morphine (at least not yet), so perhaps my pain levels are not as severe as yours. And my upper right extremity is where my RSD started so I can still walk, even though my feet have started to get pretty swollen lately.

You are usually entitled to a second opinion under any health insurance plan. Go with your gut - if you don't feel right about what your doctor has recommended, see if you find another good doc to review his treatment plan. Nothing like a second set of eyes to give you some peace of mind.

Also -can you talk to any patients who have been through the program he is referring you to? It might help you to get some real life feedback. And perhaps you could check out their website and the practitioners' credentials.

The best of luck to you. Who knows? This may be an excellent opportunity for you to get some great medical care for your condition.

[Jennelle]

Originally Posted by Grammadur

Hi Jannelle,

I'm new to rsd so i've never heard of a pain management program where you would stay for 4 weeks. It sounds interesting and might be worth a try - easy for me to say. I take Lyrica 300 mg a day and Flexeril or Darvocet for break through pain. If you decide to do this please let us know how it works. Good luck with your decision.

Sally

I'm glad the Lyrica works for you.... I couldn't get past the first week---I was running into walls!
Jennelle

[Jennelle]

Thanks to all of you for your answers and support... I was injured at work-I am a Registered Nurse that works at Mary Bridge Children's Hospital, and I hurt my self sliding a patient up in bed (250lb 10 year old). My rsd is in my left side from shoulder to hand now spreading to the right side. I think the program tries to get you off all meds, and that they work with you everyday I would live in an apartment there. Part of the big problem is that I wear the pants in the family- and have 3 soon to be step children (17,14,10yrs). My mother is also in poor health and she may have cancer and a heart condition that is being looked into so being a nurse I go to all her appointments with her....I don't want to leave her. To top it off (stop me if I sound too pitiful)in the last year I have dealt with my aunt dying, uncle committing suicide, my finance's grandma died, month later his dad and now on January 2nd his step Dad died. I have been trying to be the emotional support for everyone on top of everything else. I think that is part of the reason my case manager wants me in this program so that I will "focus on myself." I am just not that kind of person. Yes I do my home programs, fit in relaxation techniques, and still try do do everything else I used to. I tried to go back to light duty 3 times...I want to work I just can't make my body understand that. Thank you all again so very much!!!!! Finding this site has kept me sane!

[Dew58]

It will be ok; deep breath,now...Some rest will make things appear clearer to you. Stress brings more pain..I am here for you.

Dew

[dennyfan]

Originally Posted by Jennelle

My case manager wants me to enter into a pain management program that is an hour away from my home (a drive i can't do myself). It would include a physiatrist, psychologist, anathesologist, ot, pt, and vocational person.... anyone done one of these before? Is it worth leaving my family and having to live there for 4 weeks? I want to cry thinking about leaving home and having to be poked at even more than before.... plus I just talked to the program administrator and he was flabbergasted that my doctor has me on morphine for the pain....should I not be? What do you all take???? Please contact me personally or add on if you have any answers!
Jennelle

Jennelle, My Pm had discussed this option with me but the programs are across the country & not really an option. I also dont really agree with the philosophy. As to your other question I am also on morphine. I take MS contin in the extended relief & dilaudid for breakthrough. So you are not alone. I also use Topomax instead of lyrica or neurontin. Tried the other two but didnt work as well for me. You have had a really tough time lately & I can understand not wanting to leave your family right now. Its a tough choice to make. You may need to put yourself first for a bit though. There is nothing wrong with that. But with your Mom sick I can see not wanting to do that. I hope you can figure out what is best for you.
Hugs, Denny

[ali12]

Hi Jenelle,

I'm so sorry to hear that you are going through so much right now and really hope that things get better for you soon! Please know that you are in my thoughts and if I can do anything, let me know because I DO understand some of what you are going through!!

I have been onto a program that sounds similar to the one that you are looking into however it was mainly Intense Physical Therapy. The program consisted of PT, OT, Psychologists and Orthotics to make assistive devices to try and help you 'cope' with the pain. The Program lasted 3 weeks and I had 2 and a half hours of PT a day plus working with a Psychologist on top of that to try and help me cope when I wanted to give in.

I'm not going to lie to you and say that the program was easy. It wasn't and was probably one of the hardest and most painfuliest things I have done in my life! I had to go through all of the PT without any medications and I felt like giving up more times than enough but somehow, I didn't.

Before I went onto the Program, I couldn't walk. At all. I literally had to have my mum and dad carry me anywhere and use a wheelchair. 2 weeks onto the program though, I took the first steps in over a year! The Program helped me and improved my walking and I am ever so thankful for that! I can still only walk short distances and need a wheelchair for long distances BUT it makes such a difference just being able to walk from one room to another, go to the toilet on my own without having to rely on my parents for everything etc.

I have been onto the Program twice now as the PT's weren't that happy with my progress the first time as my pain and Dystonia (movement disorder) had unchanged. The second time I went onto the program, it didn't help at all. The lead PT was away at a conference and i'm not sure if that is why or not but things just didn't seem to improve at all. I do think though that I learnt a lot of coping stratergies through the program and the Psychologist was very good at explaining things to me. The Program taught me that I am in pain all the time so I may as well try and do something and be in pain rather than just sit here. It's hard at times but I try and get out as much as possible.

I still deal with severe pain on a daily basis which ranges from a 6 and a half to a 8 and a half on the pain scale BUT it makes a whole lot of difference just to be able to walk and take myself from one room to another. The program gave me some of my independance back. I hate using my wheelchair long distances but figure that is better than having to use it all the time!!

I would definitely look into the program further. The program that I went on wasn't easy at all and was extremely painful but was well worth it the first time! I'm supposed to be going onto the program again but dont think I will be doing as my PTs now feel that I need to try further 'surgical' options to try and improve the dystonia.

I really wish that there was more of these programs available. There is only 3 in the whole of the UK and I was 'lucky' to get onto the program at the top childrens hospital.

If you are considering the program, I would definitely do a lot of research into it and speak to the staff there. Make sure that they know what they are doing! If they don't, it really isn't worth it and could potentaially make you worse. See if your doctor could put you in touch with anyone else that has been on the program to see how they responded. Everyone is different when it comes to dealing with RSD but my doctors on the program told me that if you are willing to put 110% into the program, you are really likely to improve to some degree.

As for the Morphine, I have heard a few people that take it and have tried it myself. It didn't work for me so I decided to come off it. If it is working for you though, it is probably worth continuing taking. Just be careful as it is a strong medication and speak to your doctor if you have any concerns.

Take care of yourself and if you have any questions, please let me know as I will try and help you if I can!

Let us know what you decide and please know that we are all behind you 100%!

Alison.