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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 10-23-2010, 06:03 PM   #1
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Need help getting information on CRPS

Hi everybody! I'm looking for some help getting information for my Dad. He needs to find some professional documentation proving that memory loss is linked to CRPS. Does anybody know of any books or articles where we can read more about it?

 
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Old 10-24-2010, 11:28 PM   #2
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Re: Need help getting information on CRPS

CRPS is a type of RSD. I hope you are able to get the information and support you need. I think it is great that you are looking after your dad this way. toughkid aka Lynne

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Old 10-31-2010, 01:06 PM   #3
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Re: Need help getting information on CRPS

Hi, I am newly diagnosed RSD.

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Old 10-31-2010, 01:50 PM   #4
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Re: Need help getting information on CRPS

Hi.. sorry to hear about your diagnosis. Keep in mind that everyone is different and each case is unique. This board is a great place to meet other people with CRPS or RSD and it's helpful to hear the various treatments that have been tried and the different approaches doctors have used to treatr this disorder. It would be helpful if you could tell us a little bit more about yourself.. maybe share the location of your RSD ..how it started.. what your drs. have suggested so far.

I've had CRPS in my left hand and arm for almost 5 years due to a nurse sticking an IV needle through my radial nerve instead of into my vein. It hasn't been easy but I feel I am making progress.
Looking forward to hearing more from you. toughkid aka Lynne

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Old 10-31-2010, 02:46 PM   #5
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Re: Need help getting information on CRPS

"Remember this is not wriiten for pity but to let all know where I come from and I am scared to death" I had an accident Aug21 2009, where I slipted on a wet surface and came down full force on both knees. I was rushed to the hosiptal and ended up with brused bone and contusions on both knees. I saw an ortopedic doc who performed injections in both knees for pain control. By March of 2010 I was unable to walk and had a total knee replacment performed on my left knee (I choosed the left one to have done first) Went through the surgery I guess ok ended up having blood transfusion on the third day post opt. From March through Jun 14th I was doing great walking without assistance cli8mbing stairs etc. A very happy person. I was even able to work from home the whole time I was recovering. Then on Jun 15th I decided to try the comute to work. You see I work for CSC Computer Science Corporation as a Senior System Engineer Lead. I live in Newark De and commute to Philly. I ttok the train and then the bust to my office. Was in a lot of pain but scrugged it off as being normal for the comute and I was using my cane any more. Then by the third day Jun 18th I was unable to walk at all and having burning spikes feeling from mid thigh all the way down my left leg. My right knee not able to take the force of the weight. I went back to the ortho doc who stated he had no clue as to why I was in such sevear pain he took xrays and all looked fine. he suggested I may have over done it so we will wait for a couple of weeks to see if it resolves itself. 2 weeks later I was even worst with painm burning ripping spikes needles and crawling bugs feeling nothing and no one could touch my leg with out me screaming like a wet banjiee. LOL it sounds funny but not if you are the one feeling the pain. about a month after trying the ortho doc and having many test MRI, XRAYS aaaaaand aultra sounds looking for infection or blood clots and all coming back ok. I ended up in the hospital with what they though was blood clot in lung or infection from my leg. At this time I couldn't breath and have very painful feelings in my left leg I screammed just to move it or raise it up to the hospital bed level. My leg turned beet red and very hot then it would turn purlish blueish and very cold. I spent over a week in the hospital and left with gianostics of broncittus and not findings as to what was causing my symtoms in my leg. When I was released I had another appointment with the ortho doc who then refered my to a nerologist with possible RSD in Aug 2010. It is now late October and I have been on and still on several pain meds and one sezure med. Hydomorphine 2mg (daytime)and 8mg nite time. Licrya 3 times a day. It is now OCtobrer 31st as I am writting this I still am either in wheelchair or walker for short distances, in aqua therapy (I love the warm water) It is good therapy I know someday I will be able to walk again (now my left foot has rolled towards the left and I have no flection in it I am unable to bend or straighten the leg Ittorure at nite when you need to move. Nite time I take 8mg hydromorphine, amedtine, 2 tylodo PM extra Streath and 3 lidoderm patches I still wake and scream out in pain. Nite time is the worst for me. I just can't have anything touch my leg. I have learned to compensate using my right leg. Next step for me On November 1st I am see a Pain Management doctor. Yes Finally!!!!! God will release some of my pain. Now you see I have come from a very good area in my life to having it cut from underme in an instance. I will never be able to return the the job life I had due to the meds and contant pain. I now have no life. Will I ever? What can I do to beat this I refuse to lie down and let it take me but I can't even crawl now. I am at my end I just want things back as they were before the surgery.

 
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Old 11-04-2010, 03:46 AM   #6
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Re: Need help getting information on CRPS

Quote:
Originally Posted by coosissypoo View Post
"Remember this is not wriiten for pity but to let all know where I come from and I am scared to death"
Quote:
LOL it sounds funny but not if you are the one feeling the pain.
Quote:
I will never be able to return the the job life I had due to the meds and contant pain. I now have no life. Will I ever? What can I do to beat this I refuse to lie down and let it take me but I can't even crawl now. I am at my end I just want things back as they were before the surgery.
Start working from home again and you'll be suprised at what you can do. I used to employ 17 people in central London during the first 10 years of my CRPS and have worked from home for the last 6 years. I'm not being flippant, working from home gives you something to do and focus on, and that can distract you from the pain. The first thing is to work out what you can do.

With me I was the owner of a web development company but before that was a photographer. I came to sell some of my camera gear because I can't carry it and found that some lens caps were tremendously expensive. I figured I could always put a lens cap in a packet and post it, so I hired a storage unit, sourced caps from india and had some brands custom made (no logos so as not to fall foul of trading standards). Started selling on ebay at a price I thought was reasonable and sold out almost immediately. Re-invested the money, put my prices up, still sold out. Got so susccessful I had to write my own custom software to deal with the 8000 invoices I was issuing every six months. Went through the back of the amatuer photographic magasines and suppied the second hand trade with caps. Inside a year I was the biggest personal importer of caps according to HMRC who keep a log of these things for import duty. Then when the profit ceiling was reached, I moved onto something else.

Now this was easy and working hard distracted me from the pain. There were stumbling blocks like when TNT deliverd 2 tonnes of caps to my front door rather than the storage facility. At this time I was on Gabapentin and had aphysia and slurred speech so couldn't talk on the phone, so I used email and letters to communicate. My brain was also sedated by the pain killers and I was looking after a 18 month old and a newborn. Now with regards to pain management. I thought my IQ as wiped out by the sedation, that's not the case, but it took psychologists and a test on a pain management course to prove it to myself I was that convinced. My memory is rubbish though so I have to be a bit more organised and frequently find notes to myself that I cannot remember writing.

Now at the moment you are in what I would call "pain panic", it's overwhelming, your pain probably increases your adrenalin and cortisol levels because of the stress you are under. Pain also buggers the serotonin and causes depression in a lot of people. Things that I find help. a) never think of yourself as a sufferer, it's a negative word and any negativity will cause you to decline. b) use a laptop and work from bed if you have to. c) if your pain is constant in bed or out, then get out of bed, because you are still going to be in pain an you might as well do something. d) set yourself goals and write them down and tick them off, it's very positive to have a notepad full of things you managed to do. If you don't suceed the try again later. e) accept the condition, there's no point beating yourself up about something that is not going to change. I'm still gutted at having to give up my large business but I balance it with the fact that with CRPS II I probably acheived more even though the financial rewards weren't as great. f) don't become a "pain bore" where your conversation solely rotates around your pain, I've done this, you'll loose your friends eventually and become more isolated.

My experience of pain management courses is that they work maybe for two years and then you need a top up. The only benefit I really found from my courses was the IQ test because it is so easy to kid yourself into believeing you are incapable of doing things.

With regards to medication, cut out anything that is not working and experiment. It will hurt short term but reduce long term side effects. There is a high suicide rate in the UK among chronic pain patients and most of them are on tons of medication, you are mucking around with your brain chemistry so a cautious approach is best. Most pain management treatments are based around a standard approach tailored for the majority, so one of your drugs may increase your depression, with me it was anti-depressants which it turned out increased my depression.

A lot of courses are based on getting you to use the limb again. Do as much as you can and regard any progress as a positive thing rather than if you don't get 100% use back, as a negative thing. Only you can change your attitude although psychologist can prompt you in the right direction, at the end of the day it's down to you to find what you can succeed at and work on the best ways of compensating for the disease.

Frustrations. I have severe CRPS II it took two years of riding a bicycle to get my legs working to the level of using a stick, the bicycle was great because it meant I wasn't carrying my body weight so could solely focus on the limbs. What I find frustrating is people with slipped discs and not CRPS on benefits doing nothing. CRPS is disproportionate pain so don't fall into the trap that because some people are wangling the system, that it applies to you too, you can do more than you believe. Frankly no-one understands CRPS and there is not a single drug on the market that was ever made specifically for it, everything is side licenced, like anti-epileptic drugs that may have a benefit, which means the research in the field sucks.

Make the disease your own and take control of it, rather than letting it control you. Yes I state to experiment with your medication (and be careful and only test things if you know you are not going to go into withdrawal or have a seisure if you stop gabapentin), but the point is that you are in pain now anyway, it's going to last a long time and you need to tailor things to yourself, the worst that can happen is a temporary increase in pain and you've been there and dealt with it. You (and yours doctors) do not knwo 100% for example that your medication is not conflicting. Pregabalin can cause Edema, one of the symptoms of CRPS/ RDS, so you need to know that the benefits outweigh the negative. I only recently started coming to the forums not because I'm depressed or need support, but because I have an issue where vibration increase my pain past the level that the medication deals with, which means I am limited to however far I can limp so I'm looking for a solution, there may not be one but that shouldn't stop me trying.

I am not a nice sympathetic person, but I look at it this way, at the end of your life do you want to have spent the last 20 years with the condition dictating your life, or do you want to be able to look back and think damn I was unlucky but I fought it tooth and nail and succeeded in so many things ?

Philip.

 
Old 11-04-2010, 03:56 AM   #7
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Re: Need help getting information on CRPS

Quote:
Originally Posted by light91 View Post
Hi everybody! I'm looking for some help getting information for my Dad. He needs to find some professional documentation proving that memory loss is linked to CRPS. Does anybody know of any books or articles where we can read more about it?
I have severe memory loss and CRPS II, but the loss is not from CRPS II, in me it's due to diazepam, codeine and clonasepam usage over the years. CRPS does alter the brain chemistry and put the person under a lot of stress, can muck around with serotonin levels, but it's more likely to be the medication leading to memory loss rather than the condition. 6 years ago I forgot how to cook, I was standing in the kitchen ready to make a tuna pasta bake, that I had made every month for the previous 4 years (my wife is Indian and it was te first non-spicy western meal that she ever liked). I suddenly realised that I had no memory of what I put into the recipe or in which sequence, it was totally blank. It still is, even though I have swapped meds. I cannot remember my honeymoon, wedding, most of my childhood now. Randomly I have flashes but I can not tell if the events happened to me or whether I saw them on the TV, and yet I am not sedated by my medication at all. I am not aware of CRPS itself causing any memory loss, but them your father may be unique as the disease does affect people differently. I have spent a few years looking for a solution myself but never found one after reading hundreds of documents including access to medical journals as my wife is a Hospital Doctor, so sorry but I would consider side effects from the meds he's on first.

Philip.

 
Old 11-24-2010, 06:30 AM   #8
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Re: Need help getting information on CRPS

Phill

I just wanted to say well written.

I have crpsII now for almost 4 years in my right hand, wrist, entire arm, shoulder, and upper back. It took 2 years before a Dr. DX me with this. What happened was I had surgery to my right thumb joint and the Dr. severed my radial nerve. This Dr. kept telling me that the burning pain on the top of my right hand, 3 fingers, and wrist area was normal and would take time for it to go away. The pain just got worst as time pasted. I Finley went looking for a new Dr. to see what was really wrong. This took time but after having surgery in my right wrist area the Dr. found my radial nerve severed. He tried a graft which did not take, all it did was cause the pain to move up my arm to my elbow. I went to a second hand Dr. a year latter were she did several test. Now third surgery she reopen my wrist from where the first nerve surgery was done. She found the nerve was not regrowing she clean up the nerve ends and put in a 3.5 inch graft tube, replaced the bad artificial thumb joint from the very first surgery and finished up by doing carpel tunnel.

Its been a year now and the nerve pain has increased area wise as well as the amount of pain. The radial nerve is not regrowing together and this is it, I am done, no more. With each surgery the pain increases as well as spreads. I have seen at least 8 Drs. about this crps type II. 4 were pain Drs. that have treated me with loads of drugs. Very few drugs have worked but most have the side effect of forgetting things. I have found that the Drs, are treating there patients by trail and error and hope for the best out come. No two Drs. will tell you the same thing as to how to treat this except for one thing. They all want to implant a SCS. This seems to be the only common form of treatment that will help the Dr. not the patient.

What I have found is that most Doctors do not listen and just want to see you every 30 days to give scrips and bill your ins co and get your co-pay. I went to one Dr. for four months complaining about the increasing pain in my upper arm and shoulder. I was blown off until the 5th month when I got really mad at the Dr. as far as not doing anything for my new pain. He wanted to treat me with a block that has not worked yet or do the SCS. Then he wanted to send me to the Mayo Clint 400 miles away to get a second option. This Dr. knows I cannot drive more that 20 miles this is a limit I set for myself because of the drugs side effects. Nice Dr. but not treating my pain problem.

I went to a new PM Dr. and he could have cared less all he wanted to do was a SCS trail and told me that he does more than any other Dr. in a 12 state area. I had nothing to worry about it only takes him 15 minutes to put the leads in. His bed side matter was like a cold dead fish. All he talked about was how good he was and never ask me any questions. I have not gone back to this Dr. he is to good for me just ask him.

Sorry for being so long winded and some what off.

Phil's post here gives more information on how, why, what, and what can be. He has been clearer then any Dr. that I have been to to date. He is right on about the meds and what they can and will do to you. Doctors through drats at the wall hopping but they know that they really don't know what to do when it comes to treating rsd/crps. Stand your ground when it comes to how the meds side effects make you feel.

Don't let the Dr. force you into getting a SCS. The Drs. make a lot of money implanting these things but you have to remember the company rep is the one who is the one is doing all the tweaking and settings not the Dr. Fight for your rights in getting proper treatment. If the Dr. shows that he is not going to listen that fine a new one.

Keep looking for a Dr. that you feel comfortable with and is trying to help you not his ego. You got to kiss a lot of frogs to fine that one good Dr. You have to look at it this way you are going to be married to this Dr. for a long time so make the best of it. There are some giving and taking with a happy in the middle.

Pain by it self can and will cause you to forget things at time some days more then other. Get a recorder and keep it on you at all times and use it. This is a tool in helping you to remember and now is your best friend.

 
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