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Tue, Aug 13 6:10pm · CRPS in Chronic Pain

Im so sorry you have been diagnosed with this horrible didease. You won't want to talk to me. I'm taking gabapentine. The onlyreason I know I works is if i miss a dose. Althoughi have been told they will never let me suffer. After 6 Drs I'm in screaming pain every waking moment. I sleep well fortunately. Ive been dealing with it for 2 years 4 months. Sorry i cant help you.

Sat, Aug 10 1:37pm · "Dents" in leg muscles in Neuropathy

I also popped into this conversation. I DO have problems with gait. I would fall but I always manage to fall into things or grab onto others. Also I went from 168 to 89lbs in 18 months without change in eating. But was diagnosed with celiac disease and have gained back 19lbs. Prior to April 10 2017 I had sciatica, scoliosis, osteoporosis, osteoarthritis. Then I woke up on the 10th and had lost the use of my right hand and the pain felt like my hand was in boiling water. 10 days later I woke up with the same thing in my left hand. 1st neurologist said PARSONAGE TURNER SYSNDROME and said she would send a letter to my family Dr. When I went to see family Dr. Her words exactly were. I have never heard of this disease YOU WILL HAVE TO GOOGLE IT. I did, it didn't sound like my symptoms. 48 hours after the test where they poke you full of holes I had a heart attack at home whilst having a BM. 2nd neurologist said no it couldn't be PTS. he said was MONO NEURITIS MULTIPLEX. MNM family Dr said. SAME DEAL YOU WILL HAVE TO GOOGLE IT. SAME DEAL it didn't sound like my symptoms.
I went back to my old family Dr. He's not likely to tell me to Google it. He sent me to a different neurologist, the 3rd. When we got there she had gone through all the previous tests done by the others. She had made herself totally knowledgeable of my symptoms. She was what you hope for in a Dr. However yes you guessed it 3rd diagnosis. CHRONIC REGIONAL PAIN SYSNDROME. She explained every detail, no waiting to get results from family Dr. However the news was not good. It is nicknamed the suicide disease. There is no cure and no treatment. Just 24/7 pain. I am on gabapentine. I didn't think it worked until I miss a dose. Also long acting diladid and 2mg fast acting for break through pain. They don't work either. So I cry out in pain I scream in pain. My best friend is sleep and I'm very fortunate that my evening meds do their job and I sleep well. Then I wake up. It's still there. It will always be there. I will never have anything to look forward to again. I'm only 64. I worked all my life now I've lost that. My husband is drifting farther and farther away. I have zero quality of life. I know why it's nicknamed the suicide disease because I fantasize about not waking up. Having a massive heart attack. Because my death is not imminent I'm not eligible for MAID. The thought of living like this for another 2 weeks is hell but 20 years. Will not happen. I will be a statistic. Part of the over 60% that choose to end their life. I pray no one on here has this horrible disease. It breaks my heart that children can get this disease.

Wed, Jun 12 8:49pm · Living with Neuropathy - Welcome to the group in Neuropathy

Yes it's in both hands. It feels like an open sore with alcohol being poured on them. I'm on 3600mg of gabapentin a day. I wish I had never started. I have tried a couple of times to go off. I also take 9mg hydromorph contin. Slow acting Dilauded as well a 4 …2mg Dilauded spread through the day. I can ask for anything for pain but they all make me constipated so sometime I don't even take all 4 because I'm afraid of the bowel issues. I got a prescription for Cymbalta came home and first read that I have 4 other meds you can't take with it. Then I started reading about it and there was no way I was going to take that. My specialist and primary both say they will never let me suffer but I do everyday but I'm only suffering not dying so I'm not eligible for dying with Dignity. Not sure what I did in my life to deserve this then I see pictures of children with it. I'm almost 65 I don't have as many years to suffer but the little ones have nothing to look forward to.

Tue, Jun 11 10:36pm · Living with Neuropathy - Welcome to the group in Neuropathy

I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP

Mon, Feb 18 2:05pm · Parsonage turner syndrome * in Brain & Nervous System

Have tried every over the counter med everyday for 6 years. Went off all stated lactalose a month ago still nothing. 2 weeks ago I started constella nothing. All I have is a leaky discharge with gas about once a week. Dr got involved 2 weeks ago but in the last two weeks I can hardly breath because stomach and chest is so distended. Will Be seeing Dr. Thursday afraid he and my medical team aren't going to wait until the end of March before they demand long term care.

Mon, Feb 18 1:14pm · Parsonage turner syndrome * in Brain & Nervous System

Those of you on narcotics for pain how do you keep your bowels moving. I had to stop mine and am taking several types of laxatives but I've been 34 days without a bowel movement. If this new set of laxatives don't work by the end of March I have To go into long term care. My medical team have tried to keep me home but without my bowel working and my pain under control the team gave me 60 days I have 40 days left. Anyone out there find a laxative that actually works.

Wed, Feb 13 1:11pm · Gaba Lyrica Addiction in Neuropathy

I've been on Gabapentin for years. Started at 100mg per day now I take 3200 mg a day. I tried tapering off a year ago. I dropped 100mg a day for 2 weeks then another 100 for 2 weeks etc. I got down 800mg per day and started having horrible withdrawals, headaches and twice as much pain from the neuropathy. So slowly I started adding them back managed to stay at 3200 from 3600 per day. I tried a 90 day treatment with RSO/Rick Simpson OIL. It seems to be helping many cancer patients, epileptic, people with ME and ALS however it didn't help me in anyway. I vape oil before bed because it helps me sleep through the pain. I was taking 4 2mg dilaudid but constipation is so bad I dropped 2 and just suffer with the pain because the constipation is so bad I have 60 days at home using all these different laxatives, if that doesn't work I have to go to long term care. They have wanted me in care for 2 years, i guess I'm going to loose my fight because this newest laxative is not working at all and I'm taking it as well as lactulose. Still no luck. Good luck. Pray that they find a good drug for neuropathy pain. Gabapentin is for seizures but is the only thing that helps. It is very addicting but ive never gotten high. Maybe you have to take the whole bottle.lol. until I was in the middle of it I did not realize how terrible diseases of the nerves are. There is no real tests to confirm and no medication for the pain and no professional can understand the pain unless the have the disease. I believe mine is chronic Lyme but doctor's have identified it as a rare disease called Parsonage Turner Syndrome.

Wed, Jan 30 11:52am · Parsonage turner syndrome * in Brain & Nervous System

I get little relief from anything. Have been suffering with burning in my hands for almost 2 years. Mobility and strength have improved enough my thumb and pointing finger now meet again and I can pick up a pin. Not much else I can do cause when I touch anything the pain triples. I wear latex gloves periodicly throughout the day. It keeps my fingers from touching. I can touch my hair and the towel so I'm able to wash my hair. If I didn't have 8 other serious diseases maybe this one thing wouldn't be so bad. Stress seems to be the worst stresser. Good luck on your continued healing.