Hi Rita!

Welcome to our little corner of the world. I am sorry to hear what your fiance is going through, but there is one glimmer of hope that a lot of us never had the opportunity for, and that is he is getting seen right away.

Research shows that people that get treatment in the first 6 months can get the RSD into remission. Most of us didnt even find out we have RSD until we had it for a year or more. For me it was 3 1/2 years, so he is getting treatments in that golden window of opportunity.

From what I understand the blocks sometimes dont take right off, but with persistence he may well get that pain down to a tolerable level with the blocks. He may not like them, and almost everything they want to try on us hurts unfortunantly. There are those that nothing works, but im hoping he will be one of the few that it does work.

It is wonderful to see you helping him, for a lot of us our loved ones and friends pretty much dont believe the pain is that great so we dont get much sympathy or help. You will just have to look past his pain bad moods, and see the hurtin unit that he is. That right there will help him more than you know, just having someone there is a great relief for those that are confronting a life changing event like RSD.

We are here always to come and get support from, even he should come in and get it all out of his system on us instead of his loved ones. You will find the greatest bunch of people you ever met right here. Very understanding with always an ear to listen, and a shoulder to cry on.

Rita

Hi - I am Gymjunkie. I have had CRPS(Type 1) for over a year now. I have posted lots of info about my experience on the section of the board for stories so won't bore you with all that!!

One thing you need to be concerned about for your husband is the constant use of his aircast. Unless he has a genuine orthopaedic reason for continuing to use it and has been told that he must still use it, then keeping using it is the worst thing he can do.

It might make him feel emotionally "safer" and more comfortable but the immobilization and guarding is the worst thing he can do for his CRPS affected limb. It will increase the risk of movement disorder, pain related disuse, sensitivity and allodynia. He needs to ditch the aircast asap unless his ortho has told him that there is a medical reason for continuing to need the physical support for that limb/injury. He might need to wean himself out of it gradually which is fine but however hard it is, the longer he uses it, the worse it will be long term.

Don't mean to scare you in any way but all the medical evidence is that immobilization is the worst thing for CRPS.

Hi Rita and Reed! and Welcome to NT. I'm so sorry this happened to Reed and of course you. I've had RSD for 12 years following surgery. But, like many, wasn't diagnosed for a long long time. It started in one shoulder and now is full body. What I'm trying to say, it can be a life long disorder and very expensive meds and Dr appts. But, your best chance is the first few months to a year to go into remission. I don't know about the blocks, like a lot of things with RSD, people react differently to treatments and meds. Like someone mentioned, you will learn so much on this forum, just read, read, read. This disorder affects the Limbic part of brain that causes depression, short-term memory loss, a groping for the right work while speaking. and anti-depressants help with nerve pain. Because the sympathetic nerve is involved, many take high blood pressure meds. And the para-sympathetic nerve is also involved, which causes low blood pressure. So there can be instability in blood pressure. I take an anti-anxiety pill that helps so much to keep my nervous system calmer, thus less pain. Most larger cities have monthly support meetings. You can find out by looking up RSDHope is put in your zip code, they name a person ,a phone number for you to contact for meetings times. We meet here at one of the Neurological Hospitals. Generally, have a guest speaker from the medical or pharmacology field. hope your attorney has some background knowledge of RSD.
My daughter is a court reporter and has heard some cases. She doesn't here the outcome because most of her work is pretrial depositions. Just don't underestimate the costs, they are not just medical, many of us end up not being about to work. I have one hand partially crippled, looks like a claw, didn't get therapy soon enough. Massage therapy is wonderful for warming up the muscles before physical therapy. Swimming, needs to be 86 degrees or warmer- My toes were bending or curling in both feet. My Dr. gave me exercises to do daily and in a few months they touched the ground again. The Gov. counts that as a write off, if ordered by the Dr. Stretching dailey, in warm water or on the floor is very good. I believe I'd be in a wheelchair now, if my Dr. hadn't given me all these exercises. I've had about 250 therapy sessions. But now have most of both shoulders working again and both feet, and about 1/2 of left hand. I see a psychiatrist, who is a neurologist and hasa degree in pharmacology. There are some very experienced Drs on RSD. There are a lot of good things that can help us when we get down, our favority music, meditation, stretching, swimming, a pet, writing our 'understanding' friends, phoning friends,'journaling' our feelings, even if we need to burn it up after. I have one especially close friends who has it full body longer than me, from a car crash, raising 5 children. Another friend, that like me has jolts, jerks, spasms, 3 low BP and passing out=I've only had one. My husband and daughter and son-in-law are so loving and helpful.They moved to Chicago a year ago, come down here twice a month. The anti-seizure meds are expensive, but work for me, but, cause weight gain. Boo Hoo What I miss most is my energy level and generally happy self. Traveling, Tennis, Walking, 10 K's Water Skiing, Snow Skiing, biking. So many sports. Shopping, Going for dinner, having lots of friends over for dinner-BBQ had 50-70- 3-4 times a year. I really am not trying to discourage you, but sharing how some people's lives are really altered. Some of these treatments that work on some and make others worse scares me to death. It's difficult to know what to do. Our daughter and Luke got married 8 years ago. I am glad I don't have a lot of small children like my friends. She does have a daughter with one child living with them and helping, although she is still working. (daughter) Ask lots of questions, and there will always be someone to something to share, just do your own research before going forward with a new procedure. I just saw my Dr. today, and he adjusted a couple of my meds and I'm faxing some compounding phyarmacist concoction of a cream to help the burning on the bottom of your feet and hands and where you have bad burning,saw it here yesterday. Rita and Reed, the best to both of you and again I'm so sorry this happened to you, at one of the happiest time in your lives. A chance in health is really like the grieving process because there is loss in so many ways. It takes time to adjust and let go and be happy for what we have now.
I had a couple of years in counseling when my parents died suddenly and early
and it helps yet today. Be well Your RSD friend, Loretta Jewell

Thank you all so much. I want to say you don't know how much it means to either of us, but I know each of you do. This is such a scary thing..all of it.
Reed is so strong, stronger than me. I support him and try my best to be positive, but realistic (which is hard), and then I drive off to work and cry all the way there at least twice a week.
He is going on month 4 now, and the doc says if he can't get his pain level down, it's going to be hard to get him into therapy. His calf has already shrunken unbelievably, and his motion in his injured foot is very little. He does take the aircast off alot during the day and work out his foot as much as possible. He wears it mostly when he's up and "crutching" around, especially when we go to Walmart, which is really the only place he goes with me other than church since they have the motorized carts he loves to terrorize me with. lol
One big concern I have right now is the pain in his right arm that hasn't gotten better since his nerve block. I'm worried that something may have triggered it to spread.. don't know if that's possible, but it's already spread to his knee, and I'm a worrier by nature.
Anyway, I've written enough already. Thanks again to everyone. You guys are all so warm and helpful. I wish all of you the best. I will get eed to the pc tonight after work, so he can say hello for himself.

Hi Rita
I think it is often harder for the people who have to watch a loved one go through ill-health or pain because they feel helpless. I am sure your partner appreciates you though.

I think you and your partner would get a lot of comfort through more knowledge about CRPS. Have a look at the RSDS.org website which has a lot of good and reliable factual information - there is a lot of not so reliable information out there. It really helps to have knowledge when dealing with this.

I don't know what meds your partner is on but it seems unacceptably defeatist of his doctor to say that if he can't get the pain levels down, he can't go into therapy. 4 months is not long and there are lots of drugs out there that can help but it can take a bit of time and trial and error. What was his original injury to his leg - that may account for some of the muscle loss and lack of flexibility?

The blocks don't work therapeutically for everyone. In the first instance they are done mainly for diagnostic purposes to see what happens to the pain colour, temperature and so on. I had one and it did nothing for the pain unfortunately so it wasn't worth having any more done. If you are fortunate then they can provide some relief but its not something you should "expect". The other thing to bear in mind is that the more wound up and stressed you both become the worse the pain and other symptoms get so it becomes a vicious circle.

Unfortunately, it is when he is up and walking around on the painful leg that he most needs to remove the aircast even though it is painful and makes him feel vulnerable. He also needs to keep the foot and all of the other joints moving. It is the worst thing about this condition that in order to help yourself, you have to do the things that seem the most painful (and which your mind is telling you not to do).

Hope that things improve for you both - I am sure that as time goes on you will both find ways to cope even though it is horribly tough.

[QUOTE=Gymjunkie;364740] What was his original injury to his leg - that may account for some of the muscle loss and lack of flexibility?

His original injury was a crush injury to his left foot and ankle. No broken bones, just severely crushed soft tissue. I'm sure that the injury itself has alot to do with the lack of movement, especially. He hasn't been able to move his foot since the injury. He has, over time and through persistantly working it, been able to get a small amount of movement, mostly in his toes (which are completely numb).
Today is full day 5 after the block, and the pain is still worse than before. Not sure how in the world he's going to be convinced to get another nerve block, given the horrible time he had with this one.
We're just gonna keep on keepin' on, and see what happens.

Hey there!

I was just wondering about possibly having a different doctor perform a block. It sounds like this one was botched. A block should go into your sympathetic chain along your spine, not anywhere near your diaphragm. Your diaphragm is all the way on the other side of your body, near your lungs. Also, I've never had a block that involved steroids- only anesthetics. So that may be something to look into. Steroids can sometimes aggravate people and cause funny reactions. Also, when my foot hurts a lot and the movement level is down, I soak my foot in a tub of warm water with epsom salts in it and try to get my foot wiggling. Or a bath. And my personal savior . . . my heat pad!

And I'll chime in too. Immobilization bad. Movement good. I had to relearn how to walk after being on crutches and protecting my leg for a long time. I was killing my opposite hip by guarding my RSD leg. And I had no muscle mass in my affected thigh. It's a vicious circle, but less muscle mass leads to more pain, which makes you want to do less, which leads to more muscle loss. And so on and so on. So you have to get moving a bit. Swimming is great! No gravity! When the muscles around a joint are built up, those muscles can do the work, and take the pressure off of the joint.

And Loretta, can you break up your postings into more paragraphs? They're kind of hard to read as is. Thanks!

Lynn

Hi Lynn
It is common to combine the drug used to do the block with a steroid - they mix them and inject them together after injecting the dye that tells them they are in the right place. The theory is that the steroid works on the sympathetic nerves much like any other steroid injection would be used on painful or inflammed joints or soft tissue.

Rita
I don't know where your husband's block was placed. Usually it is done as a stellate ganglion block for arms and a lumbar spinal block for legs but neither block will affect the other body part if you see what I mean. You talk about your husband having CRPS in his leg but also mention problems with his arm. If the block is incorrectly done or not placed in the right spot it can cause all sorts of problems with breathing,swallowing and movement. Has your husband been back in touch with whoever performed the block to report the problems he is having? If it was done correctly and he has had so many problems then I don't see why you are assuming that he will have to have more of them done. If it doesn't help then there is no point in having any more done. This does seem to be (the) one area where the US is behind the UK - even going privately here they don't repeat pointless blocks but there seems to be more willingness to do that in the US.

Your husband needs to arm himself with as much good quality medical knowledge as he can before he sees the doc again so that he can ask the right questions and understand the answers (and recognise if he is being fobbed off with rubbish!!). There is no substitute for ensuring that you learn everything you can about CRPS - most doctors have a hopelessly low level of knowledge and understanding so the only way is for you to take that responsibility for your own treatment. Knowledge really is power with CRPS. It will also help you both to come to terms with the condition, the treatment options and the emotional side of things.

Thanks Lynn, That was a very long, long, paragraph. Have appreciated your neuroscience background. Hope this is a good day for you. Loretta

I appreciate all the answers and help, guys! Everyone has such good info and advice. Reed's been only wearing the air cast when we go out in public. The doc thought it may be a good idea, for protection. WC is still singing the song about fractures. They don't seem to understand that RSD causes swelling and discoloration. Geez where do they find these nurses? lol
Anyway, Reed's spirits are up, thanks in part to good info. So again, thanks guys! Will keep everyone posted, and he wants to put on some pics too of his RSD leg.