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.

@rwinney

Hello and welcome John @jokolk. Back pain is certainly not fun. It sounds like you're well on your way to understanding that exercise is a huge help as well as proper ergonomics and moderation/ modification. Do you go to physical therapy or are you exercising on your own?

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Hi Rachel,

Thanks for your reply. I did attend P.T for a time for my lower back pain, and then had a fall last Jan '23 fracturing 4 vertebrae (not the same location, thank God. I have joined a gym, but I spend most of my time doing cardio, partly because thats all I know, and also I fear doing something with my back might further injure it.

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@heisenberg34

Chronic, severe pain can sap the joy from your life. I had my pain under control until about three and a half years ago, when it all came flooding back. Now, I am unable do just about everything that I was doing just three years ago: cycling, walking, working in my shop, sitting for extended periods of time, etc. I had a pain pump installed just over a year ago. It has provided no pain relief. With that said, I will continue to search for answers. I just had my old spinal cord stilulator removed. I will be getting an MRI in about a month. Hopefully, this will reveal what is going on in my back and buttocks that is causing such excruciating pain. Lesson: keep on looking. Don't let the naysayers discourage you.

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Thanks Heisenburg34!

Somehow it's comforting to know I'm not the only one suffering. I hope you can find something that helps. Possibly P.T?

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@brotherchuckles80

Have you had an EMG in order to determine the cause of the pain/ Have you had an ex-ray or an MRI. I ask you this because you may be a candidate for an SCS (spinal cord stimulator). God bless you on your journey jokolk. Charles ka brotherchuckles80

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Hi Brotherchuckles80,

I'm sorry to hear about all of your medical challenges. I hope you can make your life more harmonious and healthy.
You look pretty good for 80, judging by the picture you posted. I haven't had an EMG, but after falling off a roof/ladder in Jan '23, I did get a decent work-up. My lower back pain has been around since my 20's; It certainly didn't help when I fell and fractured 4 vertebrea in my spine (above where the fractures were). I need to f/u with neurology to find further investigation and sources of relief.

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@rwinney

Hi Catherine @cwhittle2001! I like your recognition that your condition is something you CAN manage and your willingness to look for ways to do such. Kudos to you! Chronic conditions are really like our shadows were with them the rest of our lives. For me, it was important to accept that and then look for problem solving ways to live a better quality of life. What ways help you manage your condition? Do you exercise or use mindful meditation?

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Hi Catherine,

I appreciate your and Rachel's bright outlook despite the sometimes overwhelming inability to become comfortable. I completly agree our happiness in life is dependent on how we look at our life. Can we feel happy despite this one detail?! I do spent time working out at a gym (mostly cardio). I also attempt meditation, prayer, silence, reading & writing. I am feeling gratitude for all I have and try to remain positive. I do take gabapentin, 600mg at bedtime, and Motrin 400mg once or twice daily.

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@cb3

jokolk Hi, John. Have you spoken with your care provider about getting a prescription for 5% lidocaine transdermal patches? I can only vouch for myself by sharing my experience today. I used a patch for the 1st time and placed it along my sacrum and ... for the first time in months, I do not feel peripheral neuropathy pain in either of my feet. I'm so happy about this I could cry. I also use Stopain extra strength Roll On in front and behind my right knee, for a quick fix when I am in the local stores. But maybe I won't need that Stopain anymore. Only time will tell. I hope you find comfort soon. Best, CB

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Hi cb3,

It's comforting to learn there is the possibility of pain relief and with something that's not addicting and relatively easy to use. Unfortunately I didn't get any relief from the 5% Lidocaine patches. But I'm willing to keep trying to find the right source of relief.

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@catartist

I have asked about groups but Drs never had any suggestions ( I am in CT). Now I have this dissolving muscle atrophy situation and the tell me there is nothing they can do for me - nor any patients with this!!! How is that possible? It’s from daily steroid use for 40 years- others have done that! I am hungry for info about and to hear from others who are experiencing this. Thanks!

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Usually when doctors say there is nothing they can do for you, it means there's nothing more medically they can do within their specialty lane. However, there are other things that can help you manage your symptoms.

I did some poking around and came across this excerpt from Medscape on management of Corticosteroid-induced Myopathy:

{ "Some literature suggests that aerobic exercises and resistance training may help to prevent weakness or reduce its severity. Although there are no definitive recommendations regarding therapy for steroid myopathy, it would seem reasonable to direct therapy to address the weakness and resulting impaired mobility. Range-of-motion exercises (either passive, active-assisted, or active, depending on the degree of weakness) and stretching exercises should be performed to prevent joint contractures. As a general rule, resistance exercises should be limited to muscles with greater than antigravity strength. Bed mobility, balance activities, transfer training, and gait training should be included to address decreased mobility. However, high-intensity exercise should be avoided because, according to some preliminary animal research models, it may be harmful. Occupational therapy may focus on maximizing the patient's ability to independently perform activities of daily living." }

Also, here is a link to a PubMed article on Corticosteroid Induced Myopathy:

https://pubmed.ncbi.nlm.nih.gov/32491663/

Have you inquired with a physical therapist or occupational therapist who is is knowledgeable about muscle atrophy? Are you still needing to take steroids?

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@rwinney hi everyone, I am currently experiencing the symptom of Stiff Persons Syndrome.
It’s just starting for me, and it’s progressive, so I know the muscle pain I experience now will get worse.
I was referred to a Movement Specialists Neurologist. I’m just waiting for the appointment.

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@briansr

It's an honor to find a group of people that have been, and are still going<br />
through, what we all face 24/7. I'm getting worse but a lot of this startup<br />
group have alot more problems than myself. Let's try to grow this group<br />
into one large enough to let our "FRIENDS" in Washington know that we are<br />
indeed human beings and could use some representatives in D.C. to open<br />
their minds and hearts to the millions that suffer daily with very little<br />
to look forward to. I want to write, a novel, book, articles to whoever we<br />
can reach. I just need some ideas. Do you suppose there is a pain monthly<br />
magazine. LOL briansr<br />

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Respect your position and beliefs.
I believe we all need to own our problems and be accountable for our own health.
Being on 10 drugs and chronic migraine sufferer, stents, stroke, pad, severe spinal stenosis, hardening of the arteries and recovered from a coma like state 2.5 months with new challenges. It has been an uphill battle and yes I get down especially when I can’t sleep.
Scott Peck, a psycho analyst, wrote in “The Road less Traveled” 30 years ago; life is difficult, life is constant problems, life will always be challenging; when you understand, accept and truly embrace this concept life becomes easy!
I choose to not be a victim.
Dealing with chronic Paine require faith!
He is your constant friend and helper in those dark moments. I always ask Him for help and think of him on the cross suffering for me. It helps me get through while praying the Rosary.
I will pray for you all who suffer that you may find him in your hour of need. He is waiting for you.
May he be with you
Tony
It’s going to be ok!
He is with you and for you and has a plan for you. This is your test to help you find him.

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Depression can make pain feel worse. Be sure to address chronic depression. It's not just feeling depressed. There are a whole lot of symptoms a layman wouldn't normally associate with depression. Be careful of the medicine you take for it. Some cause weight gain, which won't help. They're coming out with new meds soon, that should be very good. Fingers crossed 🤞.

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@rwinney

Usually when doctors say there is nothing they can do for you, it means there's nothing more medically they can do within their specialty lane. However, there are other things that can help you manage your symptoms.

I did some poking around and came across this excerpt from Medscape on management of Corticosteroid-induced Myopathy:

{ "Some literature suggests that aerobic exercises and resistance training may help to prevent weakness or reduce its severity. Although there are no definitive recommendations regarding therapy for steroid myopathy, it would seem reasonable to direct therapy to address the weakness and resulting impaired mobility. Range-of-motion exercises (either passive, active-assisted, or active, depending on the degree of weakness) and stretching exercises should be performed to prevent joint contractures. As a general rule, resistance exercises should be limited to muscles with greater than antigravity strength. Bed mobility, balance activities, transfer training, and gait training should be included to address decreased mobility. However, high-intensity exercise should be avoided because, according to some preliminary animal research models, it may be harmful. Occupational therapy may focus on maximizing the patient's ability to independently perform activities of daily living." }

Also, here is a link to a PubMed article on Corticosteroid Induced Myopathy:

https://pubmed.ncbi.nlm.nih.gov/32491663/

Have you inquired with a physical therapist or occupational therapist who is is knowledgeable about muscle atrophy? Are you still needing to take steroids?

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Oh how kind Rachel! And helpful. I do still need to take 5 prednisone daily - can’t get off due to pain - take lots more for pain too (Orencia, tramadol, Tylenol) but never free of it. I make myself keep moving and trying- little energy but moving does help. (pT once a week. Other at home) Always ate well and now trying to eat more - stopped weight loss at 97 ish. Would love to hear from others trying to manage Cachexis etc. it‘s not knowing what to expect that is so hard. Must keep moving

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