Chronic Pain members - Welcome, please introduce yourself

Hello Anne. I was wondering if you ever found a support group for young adults. My chronic pain journey has been very similar to your sons but only recently have I looked for support from others like me my age. I’m 20 this year but my pain started when I was 14. I was diagnosed with SFN in 2020 but recently my pain has been worse and it feels like I am starting all over again. My neurologist and I talk in two days to discuss more options but it’s difficult to be optimistic after all this time. It’s exhausting trying to keep up with my body and it’s demands.

@11993scorpions2 Hey there, welcome! Thanks for joining the conversation. I know your message was to Anne, @duxbury, and I'm hoping she replies, but I wanted to let you know that she has not posted in over a year. I'm hoping she is out there and gets back to you, or someone else jumps in with experience similar to yours.

I know you came specifically seeking peer support so I'd like to invite my friend John @johnbishop who mentors in the SFN group. He might have a suggestion, or another member in mind to help you.

I am very sorry you have been experiencing chronic symptoms since age 14. I can relate to the exhaustion of trying to keep up with a challenging body and it's demands. I can also relate to the difficulty of finding optimism. Things get heavy, confusing, and frustrating. My weird "stuff" began in childhood and annoyingly stayed with me up until later in life (early 40's, I know that's wicked old to you) when I started being diagnosed with multiple conditions like SFN, and others, causing chronic pain.

You mention meeting with your neurologist soon to discuss more options. Are you comfortable sharing what has transpired thus far in your health journey regarding chronic pain and SFN?

Hello @11993scorpions2, I would like to add my welcome to Connect along with @rwinney and other members. I'm sorry to hear you have joined the neuropathy club at such a young age. You are right. It can be difficult to be optimistic but hope can keep you going and trying to keep a positive outlook is definitely a plus when you have SFN or any chronic condition. I think one of the best things you can do is learn as much as you can about your condition so that it's easier to communicate any questions you might have with your doctor or neurologist and hopefully find a treatment that brings you some relief.

You mentioned you were looking for a support group for young adults. I think COVID may have taught a lot of us the value of online support groups, Zoom and other methods of communication. No guarantees but the Foundation for Peripheral Neuropathy does have a list of support groups you might find helpful locating one close to you if one is available -- https://www.foundationforpn.org/support/support-groups/

I think it's good that you have an upcoming appointment with your neurologist to discuss more options. I also think it would be helpful for other members if they knew a little more about your neuropathy journey, symptoms and when/how you were diagnosed if you don't mind sharing what you are comfortable sharing. I shared my story in the discussion Member Neuropathy Journey Stories: What's Yours? here: https://connect.mayoclinic.org/comment/310341/

Hi, I'm 60 and was diagnosed with small twitch sensory neuropathy (diagnosed from a skin biopsy of foot and calf; only the foot is involved at this time). EMG is normal. I also have a positive ANA result. For 18 months I have had tingling in my toes and the front part of my feet. I'm in the process of undergoing more testing. I don't clearly (yet) have other clinical symptoms, and the tingling isn't very bad at this time. An arterial cold challenge test was normal...but I am on 2.5 mg/daily of amlodipine, as suggested by my primary doctor to dilate my blood vessels and thus ease the symptoms of the neuropathy because she suspected Reynaud's, and that was before I had further testing and discovered the small switch neuropathy diagnosis).

I'm skeptical of treatments that don't have clear basis from medical studies, but I'm considering getting a red light laser panel as recommended by a local chiropracter who treats neuropathy using this unit. They use the regenstore.com red light laser panel. My neurologist says it's not clear it will help, but it should not cause any damage.

I've started looking into light therapy and wow, it's a bit overwhelming. I'm not clear if the recommended 192-watt panel is the same as laser therapy? I've read some of your comments about light therapy; thank you. If anyone has comments about this particular device, I welcome them. Or anything else. And -- it's nice to meet all of you.

Welcome @mnjo, I'm pretty skeptical myself. Early on after I finally bit the bullet and got an appointment with a neurologist and was diagnosed with idiopathic small fiber neuropathy, I was looking at a neuropathy clinic that used red light laser therapy. The treatments were spendy requiring months of going back with no guarantees. I decided it wasn't worth it for me. I don't have any experience with the panel you mentioned but looking at notice at the bottom of the page tells me all I need to know.
"Our products are for aesthetic purposes and are not intended or designed to diagnose, treat or cure any disease or condition associated with the human body." --- https://regenstore.com/products/10-pack-of-192-watt-infrared-red-light-metal-panels

On the positive side if you have diabetic neuropathy --- Efficacy of low level laser therapy on painful diabetic peripheral neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4639677/. Hopefully members that have tried the product can weigh in and share their experience.

It is a bit overwhelming to say the least. I hate to admit how much money I've wasted on devices, topicals and scams to see if it would help my neuropathy. I think it's good to learn as much as you can on your condition and do your own research on treatments. A couple of the sites I have found helpful are:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

Have you tried any other treatments?

Thanks, John, for such a quick reply. The Amlodipine has helped make my feet feel warmer and has lessened the annoyance of the symptoms. I started it 12 months after the onset of symptoms. Other than that, the symptoms aren’t troubling enough to warrant other meds. I have done massage therapy (inconclusive), soaking the feet in warm water (temporary relief most times), and hiking/long walks (definitely helps). Stretching also helps. I rub and stretch my feel and that helps. I use one of those things you roll your feet on to treat plantar fasciitis; I am unclear whether that makes a difference. Wearing very loose non-elastic wool socks helps. So…lots of noninvasive health maintenance things, and light therapy would be my first venture into this land of possibly super quacky cures!

I'm 78 and have several unusual diseases that are making my life terrible.

I have Renaulds disease and osteopena. Osteopena is the arthritis that eats your bones. The other one makes me Miserable Cold all the time. Both causes heavy pain!!!!!

Hello @caresmile, Welcome to Connect from another 78 year old soon to be 79. I also have osteopenia but so far it hasn't caused me any pain other than knowing I have it. There are a couple of other discussions that you might find helpful to learn what other members have shared.

-- Raynaud's Syndrome: https://connect.mayoclinic.org/discussion/raynauds-syndrome/
-- Osteopenia: AlgaeCal Plus, strontium citrate & other treatments: https://connect.mayoclinic.org/discussion/question-5/

Have you discussed the symptom of always being cold with your doctor to see if they might have some suggestions to help?

Im 70 and have been diagnosed with chronic fatigue syndrome, very severe sleep apnea, depression and anxiety.