Mayo Clinic Connect
After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease
@bear420, I’m sending good energy your way. I hope the new & increased meds give you more relief over time, in my experience some of them take awhile to kick in. I got a lot of pain relief from acupuncture, but if you try it, make sure it’s someone your doctor recommends (because of the CRPS). The other thought is if your doctor would refer you to biofeedback or a pain psychologist, it might help you cope with the pain. Or there are CDs or free recordings online if you search “guided imagery for pain.”
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@bear420, you could try Cere Ve lotion on your face for the itching if the skin is rough and dry. If it’s not, it probably won’t help. I don’t know what you could use on the scalp. Maybe aloe Vera? I did not know about Hydroxyzine. I have taken some other anti-anxiety drug, but it didn’t help much, so I’ll have to ask. Do you feel groggy the next day? I already feel foggy with Topamax. I wish there were drugs for pain that didn’t make you feel that way. About insurance, I have it, it’s just the deductibles are so high I can’t use it. We just barely don’t qualify for the state plan in MN. It is frustrating. By next year, we should either qualify or hopefully I’ll get better and can handle FT work with benefits. CRPS can go into remission–fingers crossed that it happens for all of us!
With the topmax I feel pretty groggy in morning and sometimes I have to lay down take nap. I tried kidney beans and marbles and dry rice in bowl for therapy. That did not work out to good but I will keep trying. I do not have much of grip at all in that hand I have to use my elbow for getting in and out of certain furniture. Right hand most of time pretty much useless along with my left leg. Hydroxyzine also known as Atarax they use it for itching but also for anxiety. I do not have any side effects from that one and you can take up to four times a day.
Hi @peggyj4411 – thanks for the good wishes! I was sorry to read you’ve had severe chronic pain for your whole life. So glad you finally have a pain specialist now. I was lucky to be referred to one pretty quickly, and treating this disease (CRPS) early meant that I have more mobility than I would have otherwise (my hand is stiff but no longer a claw), plus I learned pain coping techniques along with getting medications, nerve blocks, PT & OT. I’m glad to get your input on getting an implant. I know two other people who have had mixed results – one gets relief but still needs medication, like you report, and the other didn’t find it helpful. I’m not sure what will be next for me but I am a little nervous about an implant. I know I won’t be having one this year due to my insurance (high deductible). I’m grateful for the ultra-cheap Costco pharmacy – they are much less expensive than the others. I learned that at the pain clinic. I hope you have a good week, too!
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@contentandwell, I’m sorry I didn’t see the earlier post. Yes, you’d of think there would be some advancement in knee technology in the past three decades!!! Maybe you have already discussed this, but have you seen a pain specialist about your knee? (Just a thought.) They see people for any kind of chronic pain. Maybe it would help you. I’m glad you can postpone the second knee surgery. I’d guess that relying more on the knee that bothers you now would lead to worse pain. I can’t imagine what it is like to recuperate after a liver transplant. Just needing one must have been scary. I hope that is going well for you.
Get the book PUTTING OUT THE FIRE new hope for RSD/ CRPS by Dr Katinka van der Merwe just out in 2016 she is here in the states.
Hi @jacquelinedei, thanks for the tip about the book – I hadn’t heard of it before. I’m sorry to hear how much pain CRPS is causing you. I have it, too. Can you get nerve blocks, acupuncture, biofeedback, or a pain psychologist, covered? Those are things I could recommend. Above, we were discussing neurostimulator implants, too. I haven’t tried that myself. I find some relief wearing a $20 Isotoner compression glove (CRPS is in my hand & arm), and when my arm gets too cold I use an inexpensive electric throw – it was a lifesaver this winter! I hope between all of us, somebody has an idea that will help you.
@bear420, I still drop things. Broke two glasses this weekend, in fact! Dropped one with each hand – the dominant hand is worse now, too. But I had no grip really until I worked with the rice/beans/marbles. It also helps to make my skin less sensitive. For pushing out of chairs, which I’m still working on, the OT had me push against the countertop, walls, etc. My doctor told me that it’s kind of like when people have a stroke, all the things your hand won’t do any more and you need to relearn. I’ll have to ask about hydroxizine. I like that it’s not giving you side effects. Thanks for that info!
I have pretty much have gone to none breakable dishes in my house. Dishes and glasses were getting a little to expensive. I am pretty much unable to do any exercise do to the losses of function in my ankle and foot. I have a pretty good limp when I walk do to that leg that throws me off balance alot. I have tried PT twice that has not helped at all. Can not use cane do to my right hand and wrist that has very limited function. These are part of the reason I joined the chat to see what is out there for our condition and what has worked.
@daybyday Thanks. It never occurred to see a pain specialist, I would not have thought they would deal with that type of pain. Most of the time it is bearable but it does hurt more than the knee that needs a replacement so when I finally do go I think I will talk to the orthopedist about a revision on that knee prior to replacing the other knee.
For me, the recuperation from the liver transplant was not that bad. I was pretty much 100% at two months and then gradually worked back into exercising. I do a lot of water exercise because it is so low impact and of course if I have a knee done I am land-bound again for a while due to the incision.
Needing the liver transplant definitely was scary but thankfully I felt better most of the time than many people do so I was able to put it out of mind most days and continue on normally. When I felt miserable though it was tough, and when that happened the statistic would be there in the back of my mind of how many people do not make it to transplant. That’s what’s really scary.
Dear daybyday: Thanks so much for the quick response about our battles with pain, pain, and more pain. There is a website you can go to for information (and also get a DVD ) about neurostimulators. It is Medtronic.com, the name of the company, of course. My implant is a Medtronic, and they offer a lot of information on neurostimulators, including info on self-help groups. For more information, go to tamethepain.com/help or call 888–430–7246. I am sure you will be one of the lucky ones, daybyday, to get great relief from spinal cord stimulation. The surgery itself is done under local anesthesia with heavy sedation (at least in my case) and it isn’t bad at all. Pain is torture and can truly ruin your life. Here’s hoping you find the pain relief you deserve so badly. Please let me know how you make out! My co–pays were pretty stiff for the entire process, so I also had to delay having the permanent implant put in. Anyway, I think you are on the right track, so thumbs up on your crusade to get help! Best Wishes, Peggy P.S. I love your user–name!
@JustinMcClanahan Have you heard of any one having it in there face and both eyes. The doctors do not know what they can do for me right now. I just like some relief from buring in my eyes. I also settled in my lower right rib cage. Really hard to do anything because some part of your body hurting bad.
Hi just saw ur post on the book I'm new to here I've had RSD in my feet 'the right 1 is the worst' 4 15yrs really don't know how much longer I can keep going anyway hi again will check out the book.
I have a Spinal Cord Stimulator from Medtronics, backed by a team of great people. I recommend it to anyone! But if you decide it's for you, know this: You will hate it for the first 2 weeks. That's okay. Work with your team and your implant controls to find a good place. Do EXACTLY what your Dr says (he's done more SCS's than you can imagine). If he says "Don't bend over" or "Don't lift anything heavy", then DON'T!!!! The SCS takes care of anywhere from 80-90% of the pain in my arms. I can also scrunch my neck down and increase the strength of coverage AND extend it down to my feet.
Hi @bear420, I have CRPS in all of my limbs + face and most recently my eyes! My eyes too burned like crazy one day and I had to make an emergency Optometrist appointment. Initially they were able to see that my corneas were shredded from the dryness in my eyes. That was due to the medications and not part of CRPS. I now take special gel eye drops several times a day- for the rest of my life. The CRPS became clear when I had the pressure testing on my eyes and they were able to see that the nerves in my eyes were thinning.
Other problems have also made the Optometrist believe that I may be heading towards a diagnosis of Glaucoma as well!!
I already have lost all of my teeth due to dry mouth as well, again as a side effect of the drugs. I am a mess!!!!!!
One way to control RSD is to undergo therapy, whereby you retrain the brain to understand that there is no cause for pain, by exposing yourself to the pain intentionally. After a short while your brain will realize there is in fact no injury or cause for pain and you can go about your normal life. However, every so often it will rear it’s ugly head and you’ll have to do the therapy. I am a cronic pain sufferer, however, at least I do not have to deal with this all the time anymore. Hope this helps.
THEY say its the brain no way thats why theres a blanket term for our condition its COMPLEX means they have no clue why would otc or opioids help yes ur brain trys to cope hence we forget so dont remember what pain we go through i maintain on a those havent went up in meds 4 years but since this opioid epidemic bs insurance telling drs what we can have is a crime ive had it thay know if it helps n ya made it years why change because they dont want to pay an are scared to do there jobs im happy u found something i did now it a street fight to find for relief Drs orders
Sorry janetpr, but I think your recommendation is careless and based on old school thinking of RSD- now actually referred to as CRPS- Complex Regional Pain Syndrome. Although nowhere have I ever seen recommended to “expose yourself to the pain intentionally”. That’s a new one.
Most of us who have been coping with CRPS for a while now (I have had it 8 years now) have heard it all. Especially experienced at some doctors still of the mindset that CRPS is Psychological disorder brought on by the person themselves. The most comprehensive study and informative site that I have come upon recently is that of Sean Mackey, MD, PhD, is a Professor of Anesthesiology at Stanford University Published on Mar. 19, 2013. Unfortunately, because I am new to this site it will not allow me to input the URL, however I am sure you can find the YouTube “Treatment and Research: What’s New?”
I consider myself fairly lucky, in that it only took 9 months to be diagnosed. However, unlucky in that my family physician took way to long to refer me to the Orthopaedic Surgeon who diagnosed me. You see the first 3 months are key to possibly being cured of the condition.
I was then referred on to an Anesthesiologist to have many, many nerve blocks, which for myself, only served to “numb” the pain until the block wore off. I also was on multiple medications including gabapentin & hydromorphone which did not agree with me. I did get into a trial for ketamine infusions over the period of 5 days, which I had great hopes for, however it did not have any affect on me. I most recently “applied” for the Spinal Cord Stimulation “SCS” surgery, which although only 50% success rate, I may be one of the “successful” 50%!! Unfortunately, due to having a Head Director of the Pain Centre who was one of those doctors that has not kept up to the “validation” of CRPS/RSD. refused my diagnosis of CRPS (even though my CRPS diagnosis had been validated by many doctors including Neurosurgeons, Neurologists, Anesthesiologists, & the original Orthopaedic Surgeon). She did agree that I had some kind of neuropathic condition, but then booted me out of the Pain Centre with no diagnosis. Hardly acceptable being that I am from Canada & the Hospital is the only one offering this type of treatment! I am in the midst of filing a complaint…however it most likely will have no implications, & not just because the Director just retired from the hospital.
I am currently managing my pain (which is in my left leg up to my hip & my right to my knee- beyond my knee I have Meralgia Paresthetica) with Hydromorph Contin 1200MGs/day, Cymbalta 120MG/day, Lyrica 600MG/day, Fentanyl 50MCG (patch) every other day, hydromorphone 8MG- max 10/day & Quinine Sulfate 200MG. I do have more but they are for managing most of the side effects. I also suffer from migraines which I take Cambia for.
Last year when they had me take an MRI in preparation for the SCS surgery they found two very large cysts on my ovaries which they originally did nothing for until I ended up in the Emergency Department by ambulance at 3 a.m. with ovarian torsion! But because I already had children & a hysterectomy they decided not to perform surgery. They are now just managing with Visanne.
Due to all of the dry mouth caused by the medications I just had to have oral surgery and have 14 teeth removed, Now I have dentures!!!!
Finally to add insult to injury, my husband who has been my primary care giver for the past 8 years ended up in the hospital in pain two weeks ago. After some blood work, a CT scan and a colonoscopy we found out he has colon and bile duct cancer!! I am fear that they have not caught it early enough…my husband is very jaundice and in a whole lot of pain. It took two weeks to get an appointment date for the Oncologist-Radiology which is tomorrow afternoon. Another one is with the Surgical Oncologist I believe.
I really don’t know how much more I can take. I have almost ended my life several times, as I cannot see continuing to live with this pain for the rest of my “natural” life. Now I am so conflicted,,, I need to be here for him, however I am not much use…We are not much use to each other at this point.
Regardless, I hope the information I have provided regarding CRPS helps someone. Just don’t take the diagnosis “It’s all in your head” and please, please do not inflict pain intentionally upon yourself!! Good Luck!
my story is a mirror im on that ledge ill cya in a pain free world someday GB
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