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CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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kmdenton33 | @kmdenton33 | 2 days ago
In reply to @pfox "Thank you Gail - my daughter goes twice a week for PT and sounds just like..." + (show)
@pfox

Thank you Gail - my daughter goes twice a week for PT and sounds just like what she has done to her - it helps but the CRPS keeps hitting her body so relief is temporary. I'll ask her if it referred to as ART. she now has Esophageal Spasms leading into stomach and now taking special blood pressure meds which can help slow or stop the spasms....it appears the CRPS is attacking many parts of her body... but she is a fighter... praying somewhere out there is a pill to slow or reverse this ugly disease.

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I'm so sorry to hear this is happening with your daughter. I believe that is happening with as well. I have had Esophageal Spasms lately and have pain all over my body. I have been going to PT and feel good the day of and then next day and days following, I feel like the pain is too much. I am just beginning this journey but have been diagnosed with Central Sensitisation Syndrome. There is a 3 week program at Mayo that I am going to try. It is hard to feel hopeful as I am 58 and have bulging discs and IBS and have handled all of that for years but now it is too much. Prayers for you and your daughter. My 28 year old currently has long covid and a multiple list of issues for the last one year and 7 months and it is all just too much

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kmdenton33 | @kmdenton33 | 2 days ago
In reply to @gailb "I don't claim to know anything about CRPS, but i had chronic pain in my right..." + (show)
@gailb

I don't claim to know anything about CRPS, but i had chronic pain in my right lower back, hip, leg, knee and ankle for 1.5 years. In December, 2016, I had a laminectomy surgery on my L5-S1 to fix a problem that affected my left lumbar area with acute pain. The surgery stopped the left side pain. I went through PT and pain meds for my right side pain, and nothing helped. I finally decided to try Active Release Therapy (ART) that I read about on Mayo Connect and others said had helped their pain. I had 8 sessions (2 per week) and each week my pain was less. I am almost completely pain free now, and it's been a month since my last session. I go for a touchup on Monday. This is the best thing I have ever done for my pain. ART involves deep pressure on various muscles while the practitioner moves my limbs in different directions. I use a local chiropractor, Todd Andrews, who is also certified as an ART and sports medicine practitioner. He also uses laser therapy to warm and relax the muscles. The theory behind this therapy is that your muscles get bound together with your nerves, and they have to be released in order for the pain to dissapate. I am amazed that after 1.5 years of constant excruciating pain, I am now only having a little pain at night when I sleep. I can handle that! I recommend that you check out this therapy for your daughter. Best of luck, Gail B.

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This is inspirational. Thank you for sharing.

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kmdenton33 | @kmdenton33 | 2 days ago
In reply to @cindy78 "Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at..." + (show)
@cindy78

Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

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Cindy - I had the same thing happen to me with the steroids! I had a nerve ablation done and came home and had to call 911 that day. Felt ok for a couple of days but then the Pain and Spine doctor gave me steroids and felt like I was having to go to the ER everyday until I finally did and the ER doctor said that the steroids make everything 10x worse - Like you have had 5 cups of coffee. I am also on Gabapentin and diagnosed with CSS - I am going to a 3 week program at Mayo to try and help with this. I will let you know how it goes. Prayers and Hugs

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bburch1954 | @bburch1954 | 7 hours ago
In reply to @cindy78 "Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at..." + (show)
@cindy78

Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

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I also have CRPS that I've had in my right foot for about 6 years now. I have an Abbott DRG implant, along with a NALU stimulator in my leg. Sometimes, nothing seems to work. My doctor recently scheduled me for a Lumbar sympathetic block to see if that might give me relief. I think we are trying to keep from going to a stronger med than the gabapentin and tramadol that I am currently taking (and I think I've developed a tolerance for it). Anyway, I was wondering if the steroid you are referring to is the same as the sympathetic block I am to get? I am hopeful the same thing does not happen to me. BTW, I am enrolled in the 3 weeks Mayo Comprehensive Pain Rehabilitation Center soon......and hoping it works!

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