Mayo Clinic Connect
I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.
Liked by Jen, Alumna Mentor, Leonard, teetee7, rsnowflake ... see all
I was diagnosed a little over a year ago. It started after a broken ankle. It never really healed. Got purple and blue..really bizarre. Went back 2 orthopedic surgeon and he knew someone who studied crps for 2 years at Jefferson hospital in Philadelphia. I was very lucky 2 get diagnosed early, but it all went down hill after that. I got a nerve blocker on my leg. It worked great. Unfortunately it jumped quickly 2 my arm about a month after the nerve blocker. I didn't get that lucky that time….it got really bad and nothing worked. So I got a spinal implant. Sounds scary, but saved my hand!!! They put 2 leads in in case it jumped 2 my other arm…which it did. I use an ipod to control my pain day 2 day. Weather plays a big part of good and bad days, and so is stress. So try and find something just for u 2 do on those rough days….. really! I'm a 45 year young woman and I'm coloring to calm me down and I listen to music and tune out the pain. Would like to talk more I'm rsnowflake!
Liked by teetee7, dstewart318
I forgot 2 say my health has also ditereated. I've been in the hospital several times and I feel like I barely remember words 2 say some days. My doctor told me that it's because my brain is working so hard to send the pain signals to my body it works against the rest of me..
U r not alone …
Jump to this post
@rsnowflake Good morning I'm Lioness I use to live in the Pittsburg area before moving to Calif. I have fibromyalgia O.A. and had a fracture back that gives me pain. I know about the weather issues even when it rains here I feel the change and we are in a rainy pattern now. I am 76 now but remember by 40,s it was tough that's when fibro started my mind was all over the place with that and menopause I was a wrecking ball wonder my family didn't desert me. Its good days and bad we all have but I have developed a tool box of stuff I do. Ice ,heat Tens unit for relaxation, Tappingsolutions.om if your not familiar with tapping. Tai,Chai, I started a chair exercise program here where I live Ginger turmeric tea for imflamation and it just taste goods. I wish back in those days I would have known about some of those tools . Sometimes when Dr,s don't have the answers we have to look elsewhere . I do a lot of research on any subject ,computer is great for this . WebMD.com ,https://www. nich.nih.gov I'm here if you want to talk This is a good group of people on here that care and try to help others
Liked by Parus, teetee7, rsnowflake
Thank you so much for your reply! It is a struggle every day. I also have a 15 year old daughter. She is amazing about all of this. My disorder unfortunately is like phantom pain. My brain sends pain to wherever it wants! So the pain I feel is very real and has even made me faint a few times, but there are not many doctors who treat this disorder. I got my medical marijuana card. I use it just to mellow me out , it doesn't take the pain away , but at least I can feel a little relief! Any time you would like to talk please contact me!!! People don't really get chronic pain so it's really good to talk to someone who really understands.
Liked by Parus, teetee7
@rsnowflake There's a lot of people On here that have real pain I hope others will respond When I started with fibro I was going through menopause my son was Adolescent I'm sorry to say we conflicted a lot but Love pulled us through ,he's why I moved to Calif and my grandson.From my muscles being weak I have problems there which therapy is helping and nerve pain from back I,he been into P.T. a lot from my back to hands ,shoulder and it's amazing how much it helps have you gone to Physical Therapy?If you haven't ask Dr about it you have to be your own advocate as you know your body better then anyone and push down those ugly beasties to the ground don't let them.win its your life not there's it's a fight I know but it's your fight we all have them ,sorry for getting on my soap box but if I can help of you just want to talk I'm here plus there's a group here ago to home page click on the group that interest you I'm in several here it's warmer there today yea
Thank you for responding. Everything that you just said is so familiar. Sometimes I'm so overwhelmed. I am 51 and fear that I will not be walking much longer. I live in lower Alabama and nobody locally has seen this, at least not to the extent that mine has spread. I am hoping to get out today. I need to see my sister. She is good for me. I hope that we can talk more later.
I feel like the pain doctor that I am seeing is a waste of my time. They have me taking cymbalta, lyrica, and norco. I am still in constant pain. I have asked if there are other options and was told no. I have a topical cream that helps my foot, which is where the CRPS started, but I can't rub it everywhere. I am just beginning this struggle. It sounds like you have experienced this for a long time.
Liked by rsnowflake
Hi I've also have been dealing with crps. It has been very difficult to get good treatment. The problem is because the pain is similar to phantom pain, your brain is sending signals the can't be controlled. I've tried Gabipentin, nerve blockers. But unfortunately wlonce it spread to my arm I got a spinal implant, which helped greatly. You need to find someone who deals with crps. Most doctors don't know about it, so they treat it like fibromyalgia or something like that, its totally different. Please feel free to reply for any thing you you want. It's hard to find other people with the disorder. My name is Renee.
@nam14 Hi I'm Lioness I have fibromyalgia and other back problems I was on all those meds and had either side effects or allergic to Norco in particular . I do a lot of holistic stuff and one thing I found for chronic pain with my fibro. is a product called Fibro Malic from Vitacost Ive been on it for years and its better then the Rx from Dr,s In the 90,s when I was first diagnosed then didn't know what caused it and still don't so I found this product Ive used along with Tramadol and Meloxicam I'm comfortable At night I always take my Tramadol and a Melatonin this usually works of course it depends on is you let your mind rest .
Thanks for your reply Renee. l know about crps my twin sister suffers with it plus fibromyalgia. This moment she has been in hospital 2, weeks with a bad flare up can't move.
She is saying that l have it but when l asked my Drs she just looked at me and was not really interested in me. She has sent me for physiotherapy not sure that is going to help. I was given a course of women physio but that mad it more painful.I am fine if l sit in my chair all-day and do nothing as soon as l do any sort of activity l have pelvic pain. Kind regards Carol
Thank you Renee. I am Mary Ann. I am about to walk into an optometrists office. I wear glasses but my vision is so bad sometimes. Do you have trouble with your eyes? It is painful to cry and sometimes my vision is so blurry. Some days I have a lot of trouble reading.
Liked by Parus, rsnowflake
Thank you. I will look into that for sure. I tried to order a CBD oil, one that is legal and supposed to be safe. I got scammed. It was infuriating with all I'm going through. Have you ever tried one of those?
I have it on auto send. Here is address and phone number. 17113 Miramax Pkwy. Suite 201, Miramar Florida. 43027. 858 656 2771
Yes I've always worn glasses but since being diagnosed with crps , I failed my field test st my regular eye doctor 3 times. So I have an appointment 2 go to Kremer Eye center in March. It can effect almost any thing in your body where there are nerves!! I can talk any time, feel free to contact me anytime!
@lioness Well I took the plunge and ordered the Fibro Malic. I looked at the ingredients and knew there was nothing listed that was going to be a 'flash in the pan snake oil' type of "cure". Magnesium controls so much in your body. Anyhow, I'm happy to say Fibro Malic works for me! Since taking it I have noticed significantly less muscle pain and most notably, less muscle spasms. My doctor has prescribed Baclofen 10 mg 2x day as needed. I have not had to take it as often! Along with fibromyalgia, I have nerve and chronic neck pain. When I saw my doctor last, we decided it was time for me to have RFA- Radio Frequency Ablation- on my lumbar spine.The last time I had it done was nearly 8 years ago.
Since having gastric bypass done in 2007 I know I absorb nutrients significantly lower. I've been faithful taking my vitamin/mineral supplements. Trazodone has been prescribed for me for sleep, however I find that the Oxycodone I need for pain interferes with it. I get weird dreams and therefor do not get a restful nights sleep @lioness .I see that you take Melatonin. Will you share with me how to get started taking it?
Liked by Parus
version 22.214.171.124.3Page loaded in 0.424 seconds