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My Story
Hello, My name is Kimberly, I'm soon to be 55 and I've been living with RSD/CRPS for just over two years now. I had been dealing with a Morton's neuroma for several years and tried a variety of treatments before I ran out of options. I was unable to wear "real" shoes, and spent my life in flip flops (even in the winter). For 18 months I was in and out of a boot for a broken toe and hairline fracture. My podiatrist recommended surgery to remove the neuroma. Sign me up! Anything to be rid of this pain and wear shoes again. I had the surgery in February 2013. My surgery went ok for the first couple weeks. My first two/three post operative appointments were unremarkable. However, by my fourth visit, the doctor realized I was experiencing a degree of pain, discoloration and swelling above and beyond what was typical for my surgery. He diagnosed me with RSD and sent me for a second opinion with an anesthesiologist who had a great deal of experience with RSD. I have been very fortunate to have been diagnosed and treated early. I've had several rounds of sympathetic nerve blocks, physical therapy with a therapist who was also experienced in treating patients with RSD, and pain medication. I'm down from 1800 mg to 600 mg of gabapentin a day and continue to experience a good quality of life. I've had no major flair ups lately and only experience a modicum of pain when its cold outside or I bump my foot on something. I know I've been blessed to be in the right place at the right time. I belong to a local RSD support group which has been a godsend.
I've been diagnosed with a rotator cuff injury that responded well to PT and cortisone injections, until now. I'm having an MRI next week to determine the extent of the injury and whether or not surgery is required. Knowing what I know about RSD/CRPS, I'm afraid surgery may cause it to spread to my left shoulder. My orthopedic doctor indicated we can mitigate the chances with a nerve block in advance of the surgery (if I have to have it) and I will, of course, confer with my anesthesiologist. But I'm wondering what experiences any of you have had with surgery AFTER your diagnosis. Hugs to all! |
Welcome SkyDiversMom. :Tip-Hat:
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Welcome!
I thank God have not yet required another surgery on my CRPS foot, although I see a bunion in my future :(. Your doctor may be able to give other med options pre and post op that might help. 900 mg of neurontin is now recommended to be given right before a procedure to help stave off chronic pain and the antibiotic minocycline is good post-op as it keeps the glia in the dorsal horn calm. hopefully it won't come to that! Sending Healing Love, Littlepaw :hug: |
Introduction
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My PAIN BURNING FATIGUE Medical Mess! April 2015 Bambi Tuckey Poconos, PA 60-years-old Birthdate: October 31,1954 The Norco and MS Contin enabled me to at least do some things. I am waiting for my divorce settlement to buy things I need for my pain, etc. Tests: MRIs, EMGs, EEGs, Cat Scans, etc.!!! Diagnoses: Still waiting for my RSD/CRPS diagnosis! Neuropathy Burning weakness 2006-date Diabetes controlled2012-date, but not this month cause of Prednisone High Blood Pressure Controlled 1992-date Rheumatoid Arthritis Fatigue Pain Burning Damage, Stress causes flares 2006-date??? Psoriatic Arthritis Fatigue Pain Burning Damage 2006-date??? Osteo Arthritis Knees Damage 2010-date Brain Lesion 1996-date Migraine Disease Pain Burning Nausea 1998-date Depression 1970s-date Anxiety 1980s-date Phobias Interstates High traffic and speeding Heights 1990s-date Varicose Veins 1990s-date Sjogrens Syndrome DRY mouth Lips Nose 2012 - Lost teeth 2014 TMJ BURNING PAINFUL Ears and jaws Non-Allergic Rhinitis Stuffy burning nose inflammation dry sinus infections bronchitis laryngitis 1992-date Herniated L and C and S1 discs 2012 Lung Nodules From 2013 Vitamin D Deficient and High 50+ESR 2012-date until this month cause always on Prednisone and Humira injections, but stopped injections cause they weren’t working. Possible Wegener's Crusting nosebleeds burning swelling Sinus infections via Pulmonologist 2014, but rheumatologist should be treating it. ALL autoimmune diseases do not always show in blood tests. T6 Sclerotic Density 2013-date High Chlolesterol 2014 COPD Depression Anxiety Symptoms: Pain, fatigue burning FLARES 24/7 Chronic Pain, Burning,Fatigue in back, legs, calves, head, mouth, gums, feet, hips, jaws Surgeries: Same day hemorrhoid cut and drained 1975 I did a lot of heavy lifting at work over the years. Emergency surgery severe burning and not able to urinate Abcessed Rectal Fissure Fissurectomy1983 C-Section April 1993 Hemorrhoids removed Prone position (no idea why that position!) April 2012 This is the one that caused my chronic pain 24/7 that has never left!!!After healed stopped prescribed Percocet, went to stand up from bed and screamed in pain from back legs feet April and May, 2012 I was walking on the sides of my feet!!! Tried walking 2 blocks to pool in summer w/ my daughter Had to stop every few steps and bend forward I also felt like I had ACCIDENTALLY did a split as the pain RIPPED through me!!! Taking OTC Ibuprofen like crazy More nerve testing atGMC Wilkes Barre Damaged nerves in legs feet Prescribed Nabumetone highest dose helped just a bit Prescribed Lyrica did not help Massive Oral Surgery Sjogrens Syndrome diagnosed too late to save teeth Dentist made beautiful dentures that I can barely wear. Episodes/Accidents First Migraine hot summer day frightening burning in head and nausea, walk/ran home and stayed in bedroom for 2 days with fan 1963 Massive Non-Allergic Rhinitis 1992-date Car Accident Broken Clavicle Winter 1998 Had to have my teeth extracted in May, 2014 and my gums still BURN! Hand went crazy Swelling RedBURNING had to sit still and keep it on a very soft pillow for a few days Rheumatologist tried injections that did not work and said he never saw anything like it Primary tried injections no improvement Social Security approved my SSI within weeks 2008 Nose issue! Could not breathe through nose crusting inflammation, sweating, HAD to leave LR windows open @ 20 degrees outside! Winter 2012 Walmart cold and windy food shopping back at home crying and praying for days and nights withTERRIBLE Pain Burning in my legs, feet hands 2013 Whole head tight burning Felt like a pin could pop it No stroke Summer 2013 Walmart parking lot, cold,windy waiting for bus When I got home my legs, back and feet were in so much pain and burning. I stayed on the sofa and cried and prayed for 2 days. Winter 2013 Hand got injured on bus PMC ER Xrays diagnosis “Hand Injury unspecified” Palm turned blue Spring 2014 Last back injection (November, 2014) swelled my right leg and foot double in size, extreme pain and burning, turned different colors (red, blue) Norco 10/325 3 a day, now switched to Percocet 10/325- 1 every 6 hours, doesn’t work well. MS Contin ER 15mg 1 at bedtime, no more Metformin 1000mg 1 AM and 1PM Glipizide 5mgAM PM Lipitor 40mg 1 a day Spiriva once a day, No more! Qvar 2xs a day Vitamin D 50,000mg 2Xs aweek Humira Biologic injections40mg 1 injection every 2 weeks ( brain lesion/ on watch for MS), No more! Effexor ER 150mg (But I think it’s making my Diabetes worse) Xanax 0.25 3 a day Exforge 10/320 1 a day Guanfacine 2mg 1 a day Chlorthalidone 25mg 1 a day Prednisone 5mg 1 AM and 1 PM, sometimes Protonix 40mg 1 a day Arava 20mg 1 tablet daily (chemotherapy) Which I REFUSE to take! Etodolac-400mg a day Over the Counter Meds Claritin 10mg 1 a day when needed Nasogel everyday Carmex everyday Biotene mouthwash and gels everyday Meds I can NOT take or that doesn’t work Nucynta Lamictal Neurontin Methotrexate Seroquel Topomax Wellbutrin Lyrica Butrans Patch Can NOT take antipsychotics Anti-inflammatories- massive nasal issue! But I have to Muscle relaxants do not work and make me too tired Things I hate to do because it causes PAIN AND FATIGUE! Talk on phone Take care of teeth/dentures Go to stores Ride the bus A lot! Losses Car Job Cake Business Newspaper Stringer Social life Access to things I need Swimming ALWAYS went swimming from 7-years-old! 2012 only ONCE! 2013 only ONCE cause water too cold! 2014 not at all!!! Aqua Therapy-Can't afford it even with payment plan College NCC fault! Spring Semester 2014 They revoked my state grant and I couldn’t concentrate with so much pain! I can not ride the bus all the way to Allentown for physical/aqua therapy. The place close enough to where I live doesn’t take Medicaid My divorce settlement will allow me to afford a half decent car, That is not at least until May and I had to ride a bus all the way to court in Ohio on December 22, 2014 I have 3 grown kids. My son is 43; was in Army, officer, Iraq, etc., older daughter is 39, my youngest daughter is 22 and Autistic (Aspergers), lives with me and is so great! We have 4 rescued cats. I miss doing all the things I used to so much. My parents have passed on. I have 2 brothers. My whole life is pain! |
Hey guys I just joined this page, Ive been looking for people to talk to that can relate. I am 21 years old and was diagnosed about 6 months ago. It started in my ankle but now its my entire right leg. I have tried many treatments, and now am looking for alternative ideas, or just support form people who understand. :)
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I totally understand what you mean about the meds. My grandma calls constantly and tells me she's afraid that "my heart is going to stop" or that I will become addicted. Its hard to get them to understand that I have to take these meds to be able to function. I think there is such a stigma around pain meds, and my other meds give me some unwanted side effects. Hopefully one day our family members will understand! |
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RSD Survivor ABANDONED!!
I am 62 and have had RSD/CRPS for over 20 years. I fell at work and compressed/ herniated all my lumbar disc. I was bedridden for almost 6 months until I found an RSD specialist. He had me up and active and actually functioning human for the past 18 years.
I was able to take care of my husband who is presently rehabbing from back surgery. He is due for a left hip replacement and then a right knee replacement. We also are raising our 7 & 9 year old grandchildren. But this is all in jeopardy!! As my Dr retired but not before training an associate to take over his practice. Well this Dr gave me A 90 notice that he was shutting down his RSD practice and moving across country ( Fl. To Az.) To open a clinic in a different field of medicine. That was in Nov 14 and the only Dr I have been able to find is a "pain Dr" She refuses to even discuss my pain management that has worked over 18years. Instead she will only prescribe a 4 Butrane patch 10 mcg/hr. a month instead of 300 .03 mg Buprenex inj a month. Also I have been taking 740 Baclofen 20 mg now I have 30 10mg @ month. This has led to being in the ER on 3 different times in extreme pain,high BP to the point of almost stroking. Several RSD symptoms have returned migraine,burning/pain in both legs,extreme sensitive to temp changes, inaibilty to stand for more than a couple of mins w/o having to lie down. And forget sleeping more than an hour w/o waking from the pain. I have also lost over 60 lbs along w/severe atrophy in both legs. I haven't had these problems in years. The last time I tried to discuss these problems with the "pain Dr" I asked her what happened to "doing no harm!" I was quickly informed if I was if I wasn't happy I could find another Dr. I am trying!!!! I just hope I do before its too late for me and my family |
Newly diagnosed
It has been a long journey for me but after 25 long years I finally have a diagnosis. I finally got diagnosed yesterday with CRPS. It is actually a relief to me to know what has caused me all the pain I have been suffering.
For years my ortho doctor suggested I go to a pain clinic to manage my pain. For years I declined as so many of them only hand out pain pills and send you on your doped up way. Rarely does someone find one that actually tries to fix the issues. A few months ago my back issues got so bad I went to a spine doctor to see about surgery. He said I would greatly benefit from a spinal cord stimulator. He sent me to a pain clinic for the trial one to be inserted. My appointment at the pain clinic was yesterday. All of a sudden the doctor popped in all smiles and said he wanted to talk about my leg pain. I informed him I was there for my back not my leg. He then told me he thought he could take care of both at once. That peaked my interest as I had lived in severe pain with my leg for 25 years. He proceeded to ask a bunch of questions and then touched my lower leg and asked if that hurt. I said hell yes it did. He then told me I had what was called CRPS a rare disorder. He went on to tell me what is was and what he could do for me to solve my pains. His plan of attack is as follows. First he put me on Gabapetin. Next he is planning on doing 3 nerve blocks and then put in the trial spinal cord stimulator.Due to mine being so old since it first started he said there is little hope the nerve blocks will actually work but with my insurance they are needed before the spinal cord stimulator. I finally have hope! Hope that maybe I will be able to ditch my power chair and walk again! |
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