Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for wenner @wenner

I thought I had introduces myself, Sorry.
My name is Wendy and from having RLS since the 1970s, and then this Neuropathy began in 2016, but was not diagnosed until 2025. I'm an Australian and we don't have a great health system like USA, thus I have joined your support group, and already I've learnt things I didn't know. I'm well into pain now. As people just don't understand I need to talk and listen to people who know what it is all about. Thank You @wenner

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@wenner Hi Wendy,
I also have RLS. Without the medicine I would be a raving lunatic!

The Polyneuropathy started in 2016. I developed a very rare disease in 2015 that damaged my nerves. I don’t have much pain from it but some of my toes are numb, and I got that “bugs on my skin” sensation.
It also gave me Reynard's. Touching very cold things can be very painful.

You are the first person from outside the USA who has confirmed that our healthcare here is very good compared to their own. Thank you.

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Profile picture for SusanEllen66 @SusanEllen66

@wenner Hi Wendy,
I also have RLS. Without the medicine I would be a raving lunatic!

The Polyneuropathy started in 2016. I developed a very rare disease in 2015 that damaged my nerves. I don’t have much pain from it but some of my toes are numb, and I got that “bugs on my skin” sensation.
It also gave me Reynard's. Touching very cold things can be very painful.

You are the first person from outside the USA who has confirmed that our healthcare here is very good compared to their own. Thank you.

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Did you get my reply. It just disappeared on me after wennerholme splashed across my wenner@wenner

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Profile picture for laura1970 @laura1970

I had relief of my upper back stiffness with baclofen in the pump but developed new low/mid back pain. Initial work up by the pain group (minimal, just plain X-rays) was unrevealing. I had to, over multiple visits and multiple visits insist on having the pump removed. I just had a gut feeling something was wrong.

They finally took it out and didn’t say it but implied they were done with me, no more pain pills.

Work up by a spine surgeon found arachnoiditis, inflammation of the lining of the spine in response to the pump. It was not on my release to have the pump. It is rare but becoming more common as more spine procedures are done.

If you are not getting relief, your risk / benefit ratio favors getting it removed. There is no treatment for arachnoiditis and it is progressive, ie. it gets worse as time goes on. For me, the only on who advocated for me was me. Not my PCP, neurologist, physical therapist, and definitely not the pain doctor.

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Thank you. Something for me to consider!

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Profile picture for wenner @wenner

Did you get my reply. It just disappeared on me after wennerholme splashed across my wenner@wenner

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@wenner I don’t see your reply can you send again

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I'll try , I asked were you a worker in the health system after you comment. I think you said you has RLS and I was going to tell you what I take. I don't know how to get in and find your message again @wenner

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I'm a 77-year-old male with back problems (lower vertebrae compression, 3 slightly bulging discs, plus one old, fractured vertebrae), also having general anxiety, and now swelling and pain in left knee from arthroscopic surgery 5 months ago. I'm on clonazepam at nighttime, 2 mg, for general anxiety control, and also at bedtime taking meloxicam 15 mg for pain relief of back issues. So, I have an interest in weaning off the 2 mg of clonazepam which I have been taking for 6 years and/or also increasing the 15 mg dosage of meloxicam if that is not dangerous. Also, when my back really hurts, I'd like to take Tramadol either 25 mg or 50 mg but I have heard there can be really dangerous side effects when taken with clonazepam. Could I separate the two doses by like 12 hours and be safe? Finally, would trazadone be a good alternative to getting off the clonazepam? And, can I safety increase dose of meloxicam to 23 mg (1-1/2 tabs) even though my doctor says that 15 mg is the max? I'm 5'10 inches tall and weigh 182 lbs.

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My name is Laura. I have neuropathy but no pain with that. I now have chronic lower back and glute pain from trying to build up glute muscles in physical therapy. They put ankle weights on me and it was too much as I am small-boned and had history of degenerative disc disease. I will be trying acupuncture but in the meantime I feel lost and depressed. My quality of life is impaired. I am hoping that something will work to heal me.

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Profile picture for arcuri24 @arcuri24

My name is Laura. I have neuropathy but no pain with that. I now have chronic lower back and glute pain from trying to build up glute muscles in physical therapy. They put ankle weights on me and it was too much as I am small-boned and had history of degenerative disc disease. I will be trying acupuncture but in the meantime I feel lost and depressed. My quality of life is impaired. I am hoping that something will work to heal me.

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@arcuri24 , sorry to learn of your problems. I would suggest that perhaps you were too aggressive in trying to build up your glute muscles. Anytime you start working a muscle group, you have to start slowly with small weights. Otherwise, the muscles will cry out in anger and pain. At least you do not have pain with your neuropathy(I assume you have been tested). My neuropathy created steady buzzing, tingling and pain. Every step is painful. Were you monitored by a therapist in PT? The PT should know how to start you out in weight training. Perhaps disc problems are causing some of your back pain. I wish you well in your journey. Don't give up. There are answers out there. Get second, even third opinions.

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Profile picture for heisenberg34 @heisenberg34

@arcuri24 , sorry to learn of your problems. I would suggest that perhaps you were too aggressive in trying to build up your glute muscles. Anytime you start working a muscle group, you have to start slowly with small weights. Otherwise, the muscles will cry out in anger and pain. At least you do not have pain with your neuropathy(I assume you have been tested). My neuropathy created steady buzzing, tingling and pain. Every step is painful. Were you monitored by a therapist in PT? The PT should know how to start you out in weight training. Perhaps disc problems are causing some of your back pain. I wish you well in your journey. Don't give up. There are answers out there. Get second, even third opinions.

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I was monitored by a therapist. She started me with no weights--just leg lifting and then we went to using two lbs, then three--the four lb weights were probably the tipping point. I also had muscle wasting in my glutes as a result of my neuropathy--which may be due to my celiac disease. At another PT place, they went gungho and wanted me to do thirty reps of each exercise. If I said it was too much, then they told me that I was weak and would only face further degeneration. Be wary of PT--its not all its made out to be. Today I took a long walk around my local reservoir--had some pain but saw some honking geese and the resident swan. I told myself if I had arthritic feet, I would not have been able to walk this far. I had the MRI done but the doctor who is going to give me acupuncture says my problems were caused by the muscle wasting. I am not giving up!!!

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Profile picture for arcuri24 @arcuri24

I was monitored by a therapist. She started me with no weights--just leg lifting and then we went to using two lbs, then three--the four lb weights were probably the tipping point. I also had muscle wasting in my glutes as a result of my neuropathy--which may be due to my celiac disease. At another PT place, they went gungho and wanted me to do thirty reps of each exercise. If I said it was too much, then they told me that I was weak and would only face further degeneration. Be wary of PT--its not all its made out to be. Today I took a long walk around my local reservoir--had some pain but saw some honking geese and the resident swan. I told myself if I had arthritic feet, I would not have been able to walk this far. I had the MRI done but the doctor who is going to give me acupuncture says my problems were caused by the muscle wasting. I am not giving up!!!

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I should also add that the doctor said that the ankle weights were too much and I cannot do any heavy lifting. I was given an EMG test by neurologist--he said I had a mild case. I plan to see my rheumatologist just to make sure there is no autoimmunity involved here. My brother has RA and his quality of life is great--skiing, traveling, working, etc.

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