Hello,

I'm sorry you had a need for us, you'll be happy you found this site. You are living and emotional roller coaster so hold on tight :winky. We have all been there and after 8 years I still get on sometimes.

Keep in mind no two people have the same nervous system. That is why there is no cure and what works for one person may not work for another. It takes time but there are treatment options that really can help. Finding the medications that work for you may take time but it will be time well spent.
Talk to your doctor and do as much research as you can on your treatment options that are offered. Don't allow your life to be defined by your condition. Be an active participant in your care not a spectator.

It is hard on family memebers. They love you and see your hurting and don't know what to do to help. When my husband comments on how he feels I just respond with I understand pain completely. It's ok to get frustrated with people when they complain how they feel until they walk in the shoes of someone with RSD they have no idea how bad we feel. There is a website rsds.org and it is great source of information. Maybe your husband would take the time to read some of the information on this site.

Welcome to the site you'll be glad you checked us out.

Take care,
Sherrie:grouphug

Stressedout, I am sorry your WC case manager wont let you have the cream. I use one thats similiar & you have a good doctor if you got one so quickly. Mine is fantastic though it may be differnt from yours. I tried several different creams before my pharmacist actually came up with the one I use now for me. He got my dctor to approive it. Now one of my RSD friends across the country got her doc to give it to her too. I have had RSD 3 years. I understand the husband thing its frustrating. I still hear how my husband has arthritis in his shoulder or he works all day. Or whatever. I want to scream at him I would trade him in a minute. Live in my body for one day. It takes families awhile (especially spouses I think) to come to grips with this. So much changes or can change because of this. Are life is nothing of what it was or what we planned. Are son was just about out the door to college & we were only 36 years old. I got a book on RSD & there was a chapter in it for family members & I made my husband read it. It helped him have some idea of what I was dealing with. Gettting him to appointments if possible is another. My husband had to drive me 250 miles to a specialist & that was a real wake up call too. I wish you good luck & you are welcome to PM me anytime. we are here for you is you need us.
Hugs. Denny

PS I am sorry if there are errors I am having a hard time typing tonight

Dear Stressed out,
There are many of us that have no hubby support, you can't make him understand so you consintrate on YOU! It is very important not to stress over things for your health and he will come around or he won't. Mine sees I am in pain but does not know about what is going on and I finally had to let it go.
tjbird

Hi Stressedout,

I'm so sorry to hear that you dont have the support of all of your family members! I know how frustrating it is and I think it is something that we all have to deal with unfortunately.

I too have dealt with the family not understanding. My grandparents didn't get RSD at all and they wouldn't ask how I was or how I got on at the hospital appointments etc. I got VERY frustrated and felt like they didn't care about me or how I felt. It got to the point where my parents were getting frustrated also so my dad went round and had an argument with my grandparents and told them that I needed them now more than ever.

It took them a while to start understanding and I didn't go round for a few weeks. Eventually though, I decided that I would go round on a bad day so they saw how bad it can get. It was very hard for me to go round and they still didn't understand how ill I was feeling but I think they started understanding a bit more then. My grandad explained that he was sorry about how he treated me and that he didn't know what RSD was and didn't think he fully would.

The day after I plucked up the courage to go and see my grandparents, we got a phone call from my nanan saying that she thought my grandad had passed away. Unfortunately, she was correct. My grandad could be really frustrating at times and caused a lot of hurt and upset but let me tell you, I would much sooner have that then not see him at all! My grandad has been dead 5 months now and not a day goes by where I dont wish he was here. I miss him soooo much and wish I could just see him again and tell him how much I loved him. I'm in tears now writing this. My dad never got the chance to see my grandad before he died due to the argument that he had with him and for so long he blamed me for what happened. I felt guilty also because I felt as though it was my fault and that I was to blame.

I guess my point is, I know that family can be VERY frustrating and cause so much upset whilst they are here but it is only when something truly happens to them that you realise how important they are. Yes my grandad was very annoying at times and upset me but I would give anything to have him back here now and just to be able to see him for one final time. I loved him so much and it was only when he passed away that I realised how important he was to me.

Unfortunately, you can't get family to understand what you go through. I don't think anyone would fully understand how bad RSD is unless they have it themselves. I am SO lucky to have my mums support and she has helped me so much - I dont know what I would do without her.

If I could suggest anything to try and help your family understand, it would be to try and write something in simple terms about what RSD is and how it affects you. So many articles on the internet are in scientific terms and are hard to read. Maybe ask them to come to the hospital appointments with you and get your doctor to explain RSD to them.

I'm sorry if i'm rambling. I guess my point is to just make the most of your family because you dont know what is around the corner. Reach out to them and tell them how you are feeling but dont fall out with them. There is a fine balance between saying too much and not saying enough.

Take care of yourself and I hope your family start understanding more soon. If they dont though, dont waste precious energy over them! My dad doesn't understand what RSD is at all and I have basically given up on trying to explain to him. It really hurts me but there is no point in telling him if he refuses to understand. I think sometimes, family members hate to see us suffering so much and therefore play 'ostritch' and bury their heads under the sand and pretend it isn't happening. Thats not to excuse their attitude but might give you some insight into it. RSD affects the whole family unfortunately and it isn't easy for any of us.

Take care of yourself and if you need anything, please know that I am here for you! It took a lot for me to write that post so I hope it helped you and that I wasn't rambling too much!

Love and hugs,
Alison.

Hi stressedout,
I am truly sorry about your hand and RSD It's rough I know. My left hand is partially frozen permanently due to wrong diagnosis and getting therapy soon enough. Before I injured my hand while water skiing, i had frozen shoulder in one shoulder then the other. Got full use thru therapy. Wasn't diagnosed for 4 years after the hand injury. Flew to Drs. several states away. One minute and followed up with tests. Got started with therapy next day, but not soon enough. I can eat by myself now and button clothes and dress, but all that would have been impossible without therapy. What I want to say is DON'T let the case manager push you around. Your care at this early stage is critical. She has no right to go against your Drs. recommendation for the compounding cream. The cream will help a lot. I'd get an attorney to let them get the picture. Any hold up on your care because of SC fooling around is inexcusable! Your attorney will let them know how liable they will be for permanent injury because of slow treatment. Sorry to be so mean, but been around the legal-medical system way too long. My daughter is a court reporter and my mother died because of an incompetent DR.
This is a wonderful forum with lots of support. You could look up the national organization RSDSA and find a local support group. Where do you live? Just have to put your zip code down and the will give you the closest support group and a name and phone number. I just attended the annual meeting here inScottsdale, AZ Wonderful. I'll share more about it later. It's worth even going to the Cleveland Clinic, or Philadelphia. There realy are Drs. that specialize in the nerve blocks should you choose to have one. Some people do real well with them, and some get worse. I don't know if getting worse is because of the block or way it was given. I never did have one, because it was 4-5 years before getting diagnosed and it has spread full body. Please, ask lots of questions, write things down, our short term memory gives us problems. Just read read read like was suggested. Take care, and let us know how you are. We all care about you, loretta jewell

I am on Ultram ER 300 mg. daily; also hydrocodone(10/500 mg. x4 per day) and neurontin(2400 mg.). I am surprised the PM didn't prescribe neurontin or Lyrica for you, as that is the med that helps my "burn" calm down.
It is a roller coaster ride;however, you should feel free to contact your doc and share that you are still having intense pain and your doc hopefully will address your pain issues.

Hang in there, you have a great support system here on NeuroTalk.
Dew

Thanks Dew,
The Dr prescribed a cream for my hand that had alot of things in it he said would help the burn but workers comp won't pay for it. The Ultram is 50 mg every 6 hours and it helps but very little. I guess I should call, maybe he'll increase it. I feel a little better today, can only cry so much. Guess the taking charge and fighting is kicking in. My hand isn't as swollen or purple right now but by tonight it will be...gets worse by the end of the day. Is that typical? It still goes numb and cramps. I just can't get past the Dr saying it's "mild", doesn't feel mild.

Dear Stressed Out,

Please consider getting a lawyer to represent you. Not the guy on the back of the phone book. Check with your neighbors, friends, relatives, other lawyers that you respect, and find the best WC lawyer that you can. He may have the smallest ad in the phone book because he doesn't need to advertise. I am also a WC case with RSD (now full body). The insurance companies work for themselves, not you, and they will screw you over and over unless you have someone to help you. RSD is a lifetime thing. You are going to need help getting the meds, the physical therapy, the doctors and all the treatments that they recommend. Its all going to add up to a lot of money and the WC company is going to try to run all over you. Even with a lawyer I am stressed all the time trying to get what I need.

There is an enormous amount of medical info regarding RSD on the RSDSA.org website. At the beginning of my illness, I joined the association and they sent me some great info in the mail that I shared with my husband. It gave him a much better understanding of the syndrome. I believe that it is only $20 or $25 annually to join. I urge you to check it out.

I also feel much better in the morning than at night, and when the sun is out versus when it is rainy/snowy and cold.

I tried Ultram for a while - it didn't touch my pain. It may be time to find a doctor that is better versed in RSD if that is all he is going to offer you.

Good luck to you. Sandy

Things often get worse over the course of the day. It's just from having to use the limb and all. Frustrating as that is, it's very "normal". Including the numbness and cramping as well.

It often takes some trial and error to find the meds which will help with the pain, muscle spams and burning. I'm not sure upping your current med will help much. Would he consider giving you something else for the pain? I'm lucky to manage with vicodin 10mg 4 x's a day and baclofen for the spasms and jerking 10mg, 3 x's a day. I was on Lyrica but it made the numbness in my legs worse so I quit taking it after a year.

I was a work comp case so I know things will get rough for you. I know others have mentioned a getting a lawyer. I second that one!! It seems like once you're dx with rsd, wc gets nasty and the denying and delaying begin. Lawyers offer a free consultation. Take advantage of that to find a good one. I was lucky to find a great lawyer. He was the first one I talked to. I was even luckier because he knew what rsd was, what it would do or could do and had represented and was representing many other rsd'ers at the time. They get paid when you settle your case.

Hang in there! Research and be your own advocate and keep that fighting spirit!!



Karen

I broke down and paid for the gel the pm dr. wants me to try on my hand for the burning. Birhday gift to my self. Hope it helps. I also told them I will try the blocks. Waiting on approval now I guess.I am scared though. I hear some say they are painful and don't work and others say the opposite. What can I expect? Also, how long will I be in OT therapy? Don't they stop that at some point? It helps alot. I guess I am just trying to see the road I am headed down. Since it is a wc case won't they stop everything at some point? Then what?I got up this morning and although the pain was still there the swelling and color weren't bad but as the day goes on it's getting worse. The dr seems so sure the blocks will stop this, is he just trying to be positive or do I really have a chance? I am getting more numbness and tingling and now I get a tremor when I try to do my excersises. I am so afraid to stop moving it, when I do it gets tight or cramps. I haven't gotten a lawyer and have just been hesitant, I do have good dr's but if this doesn't go away, who will pay for treatments?