CRPS

I had a severe accident in October 2011 and required surgery and implants in my elbow. I know have a severe case of Complex Regional Pain Syndrome (RSD) that has seized my hand and taken over most of my arm. I'm in a position that my ulnar nerve is damaged but the option of taking my hardware out can possibly worsen my pain syndrome. Specialists are very hesitant. Has anyone experienced this type of injury and complications? Any positive results? I feel alone with this and CRPS 11 is only suppose to worsen. Anyone???? Life has changed drastically.

Good morning 1DizzyGirl, I too love your user name. Welcome to the chronic pain forum. I am so sorry to read about your accident and now have the evil CRPS to deal with on top of everything else. We do have some members here with CRPS, however, I do not think we have anyone where its limited to their arm. Do you know what stage your CRPS is? The main thing is to keep it limited to just your arm. What type of dr is treating you for this condition? One of our moderators here at the forum has this too. I do know that some people can get into remission and not have problems again for a long time. Hopefully this will happen to you. I think each case is an individual type of thing & no two cases are alike too.

I hope that you will stay and get to know everyone here at the forum. We have a great group of caring people here. We share our stories & experiences and learn a lot from each other. If you ever need to talk to someone or feel like you need to vent & get something off your chest, this is a good place to come to and let it go. You will never be alone when you come here.

The weekends tend to be a little slow so as the day rolls on more people will pop in & out. Don't get discouraged if not many respond at first, lol. Also, you can use our search feature here at the forum,its at the top here I believe on the right.Type in CRPS and you will find a lot of posts there discussing it.

Anyway, I wanted to say hello & welcome aboard. Our forum does have rules that are at the top towards the right side. Take a look at them when you get a chance they are pretty basic nothing drastic, lol.

Take care....Susie

Hi Dizzy
I wanted to pop in and welcome you to our cp forum. Glad you found us but sorry you are hurting so much.
One of our mods has crps, although she hasn't been able to post very much lately as she is in such great pain.
I will let her know that you posted here so she can try to come and have a visit with you.
I hope you will keep posting with us and let us know how you are doing. We do understand and we do care.

suzane

Hi Kym

Yes it is laura who has severe crps. I sent her a message.

I too am in Canada, in Ottawa, Ontario. Where do you live.

Once again welcome. you will love it here.

Suzane

We've been in Ottawa for 26 yrs. As a child I lived in Belleville and Trenton on the base. We have been in your area before. Also camped at Sandbanks. It's great to meet someone nearby. Make sure you let me know if you are ever in Ottawa.

Suzane

Hi Kym, and welcome, though I'm very sorry you've needed to seek us out.

I'm sorry I've only just dropped by - I haven't been around much in recent months but our lovely Suzane dropped me a line to let me know that you had joined.

I can understand your surgeon's reluctance to remove your hardware - but something else they ought to consider is whether the hardware itself could be contributing to your pain. If you do have to undergo further surgery, its important to take precautions and have a pain specialist, anaesthetist and surgeon who will work together.

Your back pain - hopefully its not CRPS. The first thing I would think of, because it happens to me too (though my lower body is much worse than upper) is that because you've got such a sore arm it's likely you're holding it differently, using your shoulder and back muscles differently, and this can cause a surprising amount of pain. Maybe ask your physio to assess you next time you see him/her. I'm so pleased to see your physio has you doing mirror box...it doesn't help everyone...but I'm guessing from that your physio has some CRPS knowledge?

It's important that you do get yourself a good pain management doctor. It's still worth trying things like sympathetic nerve block if you've not done them, maybe other types of block, different med options. Try to hang in there

Whole body CRPS is a rarity...I'm actually now under review by another neurologist (and soon to see another, more specialised neuro) who believes I have developed generalised autonomic disease - though whether as a result of the CRPS or not, I don't know.

My progression in any case (apologies for the length)-- in 1999 (aged 14) I fell and hurt my right knee, needed minor surgery. I had persistent swelling and severe pain after surgery, but the ortho decided it was down to me being a 'typical teenage girl looking for attention', and aside from a couple of sympathetic physios I had no help (and no diagnosis) for six years. I had improved function with one physio, no real pain relief but I was more active, and in 2005 I had two bad falls in as many months. Hurt the same knee again, needed another op. This time my whole leg blew up from mid thigh to my foot, and this ortho diagnosed 'RSD'. Saw a PM I couldn't stand, got nowhere with. Few months later had a final review with ortho, who nearly died of shock at how bad my leg had got - red/black, twice the size of the other - he rang another PM then and there (8:30pm Monday night), got me scheduled for lumbar blocks that Wednesday.

I went through blocks, some meds, without much luck, then had a spinal cord stimulator implanted in 2006 - gave me enormous relief. I was in vet school at the time.

FFwd to 2008 - finished vet school, starting work. I've got worsening contractures (twisting) in my CRPS foot so I've spent the last two years on crutches. On days that I can't weightbear, I'm putting a lot of pressure on my 'good' leg - and I'm sure that's what led to the spread.

My foot was very sore one day - not achy sore, but that electrical/burning sore, and when I took my boot off after work I just knew. It took only a few weeks from the initial pain in my foot to full left leg involvement, and my right, then left hands and arms followed pretty quickly. My right arm was made worse because I got bad cellulitis in my legs and had to have a PICC placed - and in doing so they hit the nerves in my arm twice. I've also had flares of the right side of my face - just like a limb, my face will swell, change colour, change temperature (usually HOT).

The internal stuff - is arguable about whether its CRPS or dysautonomia. I know a few CRPS-ers who have both, and I know CRPS-ers who only have CRPS, but have some of these issues as well... The worst for me is the gastroparesis, which means my stomach doesnt work too well. At one point I lost half my bodyweight, and needed a feeding tube to survive. I've issues with my heart rate and blood pressure, temperature regulation and so on.

It sounds horrible - and it is - but try not to be afraid of it. It really is rare beyond rare.

I'm not sure what your doctors mean by 'dysphoric', as I thought dysphoric related to mood...'dystonic' maybe? The shiny - I'd imagine means you have shiny skin? Which is a very common feature of CRPS. And contracture means contracted/shortened - is your hand drawn into a fist? Or you have difficulty straightening your wrist or elbow?

Feel free to contact me any time. I don't know how often I'll be making it to the forum at the moment, but my email should be beside my name if you've something you really need to ask and I've not been around for a few days :)

Laura

Kym, I hope that your appointment went as well as it could have done :)

My limbs don't sweat either. In fact, I don't really sweat at all, to the point that I actually have trouble staying cool on very hot days. It's the middle of summer here (Australia) so our really hot days are high 30's to low 40's C - and I have to constantly wet myself down, have cool showers (which the CRPS loves...not ), etc to stop my temp getting too high.

hi kym i'm no doc but i'm a student of pain since i've suffered for over 50 yrs. just thought i'd throw my two cents worth in.
crps is a terrible disease and it is also not completely understood. pain from crps is far greater that most pain problems. if it was me i would not want to aggravate a limb that is actively in pain from the crps. god forbid it got worse. i would want to wait till the disease had eased off to the point where selling had gone down. ....pal pete

hi kym i just completed the health info for my signature. for some reason it isnt showing up yet. when i was 17 i developed a disease called acromegaly caused by pituitary gland tumor. the disease really made my bones grow so the spine developed too many areas of pressure and arthritis. i cant walk and i'm in a power wheelchair. i have not had much luck easing my pelvis and leg pain but i've done very well easing my upper body pain. a 4 level fusion and lots of repetitive exercise did the trick.
i find stretching and exercise my best friend for relieving pain.drugs dont help too much but dilaudid does seem to give me more energy.
i help with another web site on pain and did a lot of reading on crps to help the members there...
what drugs do they inject into you now?.....pal pete

Hello Brittany and welcome to the chronic pain forum. I am so sorry to read that you have CRPS, that is just a terrible condition for anyone to suffer with. However, you should be commended for your attitude in dealing with it.

If you do not mind we ask all new members to start the own intro thread so that all members will see it & be able to give you a proper hello & welcome aboard. By posting on someone else's thread not everyone will see this.

To start a new post click Post New Topic and a heading box with appear, type in your heading, click enter and you can copy and paste what you have written above for an intro post.

Thanks.......Susie

Brittany, hi - and welcome. I look forward to reading your story if you feel up to sharing it.

Kym, sorry that it's taken me a wee while to come back to you. The question of surgery is always going to be a very hard one with CRPS. Obviously any further 'trauma' risks making things worse at the original site - or causing spread - but you need to weigh that against any potential benefits.

I'm not clear on what sort of surgery your doctor is talking about when you say that scar tissue might cause problems...do you mean they worry that scarring might impinge on the nerve and increase your pain? If that's the case, then it might be worth proceeding very carefully - but ONLY you can't get get pain relief through conservative means and you have doctor/surgeon/anaesthetist/etc., with a good pain management plan in place beforehand. My only experiences of surgery have not been good, but one of my closest friends (who has CRPS in both feet by way of a sprained ankle) discovered a couple of years ago that she had a nerve trapped in scar tissue - and that it was making her CRPS much worse. She had surgery to release it (I think done by a reconstructive/plastic surgeon...something like that from memory) and now has substantially lower pain levels than before. I'm sure, if you wanted, that she'd be happy to have a chat with you by email (maybe email me using the tab under my name?)

As for tendon release...I looked into it because I'm in a similar position with my feet. Even when my pain is low enough to walk, my best effort is short distances on crutches because I have what look like really bad club feet. My PM said that no surgeon would touch them - and that if any surgeon agreed to do it, he was a cowboy and I should run a 1000 miles, that's how dangerous it would be to even consider it. He did said he could well understand why I would want to try it, and that with stable CRPS, well managed pain, good circulation and all the rest, it might be okay - but said with me in all likelihood I would have massive wound breakdown, might end up losing a leg, would cause a lot of problems with the CRPS >> I have horrible circulation in my legs/feet and because of my poor nutrition I've got generally poor healing, can take weeks and weeks even to heal an IV site.

I hope you can get some good relief with more conservative treatments... There are other things to try before surgery anyway - different muscle relaxants, splinting to work against the contractures (even though immobilisation isn't good for CRPS, you can try using a custom-made splint for your hand and wrist maybe?). Botox injections might be a possibility too >> this relaxes the muscle contracture in your wrist/forearm so that your hand can open.

I hope you're having as low a pain day as possible.

Laura

hi 1dizzygirl I have this CRPS i my hands and arms and it kills just to type this

only warm water and ketamine work

I can't get ketamine as it's illegal here in the UK

stay away from nerve blocks they make it spread