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Wed, Jun 10 1:00am · Parsonage turner syndrome * in Brain & Nervous System

Hello Missy… so sorry to hear about your pain. My PTS started 2+ years ago – I can tell you it WILL get better. My BEST advice to you is to find a doctor to work with who can give you steroid shots. Over the course of my case I had 2 spinal injections in the neck and 2 injections in my index finger. After each steroid injection (about 2 weeks after the injection) I would see an improvement in my symptoms. I would say the SHOOTING pains lasted about 6 months and after that the biggest pain source was my hand. Because of the pain and swelling I completely stopped (or couldn't) bend my index finger. I finally went and saw a hand specialist and he gave me the hand injection and sent me to physical therapy. It was tough therapy – very painful as they slowly forced my finger into moving again. Probably 2 months of hand therapy and I was finally able to fully bend the finger again. I took alot of gabapentin along the way – I do think it was helpful but getting off of it was a long process. It was about a 6 month long weaning process to get off of it. Decreasing the dose by 100 mg per every 2 weeks or so until I could finally stop it all together. My hand is still numb and painful every day but I'm able to push through it. The strange overall weakness of the arm is really a freaky feeling. I've been off the gaba for 6 months and feeling better every day.

I think both ice and heat are helpful. At work I would always have an ice bag at my desk. (I had to stop using my right hand for the mouse – learned to use my left.) I used rice bags that can be microwaved – I still use a heating pad at night to calm it down before falling asleep.

Post again and give us an update about how you are doing. My heart goes out to you… I know how overwhelming it can be to feel like no one can understand what you are feeling – I always said there's no outward evidence of my pain so no one really understands. If you have a bleeding wound everyone can SEE why your in pain – but with nerve pain it's almost like its in your head and not real. But its VERY real!

Mon, Jan 13 11:01pm · Parsonage turner syndrome * in Brain & Nervous System

Thought I would give this page a quick update on my progress. I was able to SLOWLY wean myself off of the Gabapentin I was taking. It took me 6 months of slowly reducing the amount to get completely off of the drug. I've been off for 2 months now and am very glad to have clear thinking, vision and my motivation back. However, the pain in my hand continues. I still have total numbness, horrible pain sensations, I can fully move the hand but it is painful making a full fist. I've just determined that living with THAT pain is better than living with the drug haze caused by the Gabapentin. So… it's possible to reduce or even eliminate that drug. At least now I know what my true pain level is… if needed I can go back on the gaba – but so far so good!

Jul 22, 2019 · Parsonage turner syndrome * in Brain & Nervous System

@josebaltierraiii I'm probably too late to be helpful with your question about whether I would "self medicate" with Gabapentin if I had a relapse… and the answer is… YES I would. I'm not completely off of it yet, but I intend to keep some of the extras around in case on an emergency. It takes days/weeks to get into the primary dr and in the mean time I would self medicate. BUT… one article I read about PTS said that EARLY administration of steroids could lessen the nerve damage done – so THAT would be my first thing to do… call my DR in tears asking for prednisone or just sitting in his office until he has time to see me… hope that helps! You should post an update so we know how you're doing.

Jul 22, 2019 · Cleaning your CPAP mask. in Sleep Health

Hey… just an update. I completely stopped using the humidity and have been having great success! My cleaning routine has gotten more relaxed too and I haven't had any problems. Family tell me now that I'm not snoring anymore – except for in the morning when I sometime kick off the mask. Once you get past the learning period it seems to be pretty routine now. I'd encourage anyone thinking they might be needing CPAP to look into it and not be afraid of it… it's just an aid to the good night sleep you've been missing!!

Jul 22, 2019 · Parsonage turner syndrome * in Brain & Nervous System

Hello @kimchi19 I'm 15 months into my PTS story and I can tell you it DOES get better with time but you have to be patient! Here's somethings to know: 1. If you have hand mobility issues get to a hand PT ASAP. My dominant hand was affected, the index finger became completely rigid. Doing anything became almost impossible. I finally ended up going to see a hand specialist who gave steroid shots and then I started hand therapy. Getting back the use of my hand was a tremendous improvement. 2. gabapentin is a mixed blessing. I would NOT have made it through the most painful times without it, but getting off of it has been challenging. At the most I was taking 1800mg per day ( 6 300mg pills), I tried to reduce by 1 pill/day and could not. The nerve pain would return with a vengence… finally the hand doctor suggested I get 100mg pills so I could wean off more slowly. Since then I've been reducing by 100mg every 2 weeks. I'm down to 900mg daily now. It's still a struggle! The pain is very real and it takes alot of commitment, but I AM going to get off of this medication THIS year! 3. Avoid any surgery if you can. I got impatient with my recovery and kinda pushed my hand doctor into doing a tendon release surgery. It all went well, but I think some of the pain I'm having now is related to that surgery. Probably if I had just been patient I would be in a better place. It's never the best course to have a surgeon digging around inside your body unless it's 110% necessary! 4. It's really hard to let go and let others do things for me! Takes this time to allow others to be your support.

Hope some of that is helpful! Keep us posted on your progress…
JJ

Feb 15, 2019 · Cleaning your CPAP mask. in Sleep Health

Hello All… Based on some of the discussion above I think I'm going to try the CPAP tonight without the humidifier. I'm guessing I can do that by just not filling the tank.

Feb 12, 2019 · Parsonage turner syndrome * in Brain & Nervous System

@scout138 I too have had multiple bouts with PTS – first time at about (age 20). I had a couple of rounds in my early 20's. Both of those affected by scapulas and caused winging of the scapula. It took years to recover and even then the movement in my shoulder and back is not "normal" but I get everything done I need to do! This latest round (age 57) has affected my arm, elbow and hand. I could NOT agree MORE with you about RANGE OF MOTION! I completely lost the usage of my right hand and have had to work very hard to get it back. Still have alot of pain and discomfort but so much better than last summer. Would highly recommend to all that if you have hand usage problems (index finger became rigid and unbendable) that you go to a HAND specialist! None of the multiple neurologists I went to seemed to care about my hand issues and THAT was the only thing I cared about! I went to the hand specialist on my own without a referral because I knew he could help me… and so far he's the only one who has helped!!

Jan 30, 2019 · Parsonage turner syndrome * in Brain & Nervous System

@nychole3080 Here's the page I'm hoping will be helpful for you!!