Chronic Pain members - Welcome, please introduce yourself

Hello @seanivor, you mentioned small fiber neuropathy, here is a discussion dedicated to just that that you may want to check out and participate in, https://connect.mayoclinic.org/discussion/small-fiber-neuropathy.

@JustinMcClanahan
Hi!
I just read @seanivor post and your reply. I found it very interesting and I followed the link you provided as well as other links in other areas.
I've had many issues with my spine for which I have had 2 surgeries this year. Thank goodness the chronic pain I lived with for 10+ years are gone. Last summer, before my 2nd surgery, I found that I could not move my foot from left to right or raise my toes when my right foot was flat. My toes were also numb. My right foot was OK although it did not move normally. My surgeon did not know if it was coming from my lumbar issues, but the problem did not get any better after my surgery. I've had many tests including blood, x-ray, MRI, mylogram (ouch!!!), EEG for the nerves, and some sort of ultrasounds by a vascular surgeon. Nothing was definitive.
My neurosurgeon is perplexed and sent me to a neurologist. Upon a thorough exam, she ordered more blood work and another EEG (EMG???). I go tomorrow.
I do have osteo-arthritis and fibromyalgia. Until I read the info about small-fiber neuropothy I thought that some of the things that has been happening to me was just my body breaking down or getting older (just turned 64 this week). Anyway, I have dry eyes, dry mouth, I get itches in my feet and/or toes that I feel like I cannot scratch hard enough to reach it, I get shooting pains in in feet that do not last more than a little while (I attritubted it to spasms), I do not sleep well at all (I am lucky to get 3-4 hours and that is NOT straight through), no bladder or bowel issues (except constipation), I cannot stand in one spot for long, I fall, on occasions, I do get dizzy and so on. The info talked about being diabetic or pre-diabetic. Two years ago, I was pre-diabetic. I had weight loss surgery and lost between 80-90 pounds (depending on the day) and all my blood levels were perfect. Except.....when the neurologist checked my blood, my thyroid was EXTREMEMLY LOW. For years and years, even before my weight loss, I had a slow thyroid, but with meds, it has been fine AND I just had blood work about 4 months ago and it was fine. This becomes more interesting!!!!
I've copied some of the things I read and will bring it up to the doc. It is not something I WANT, but I think it is something that needs to be looked into.

Sorry for going on and on....
Ronnie (GRANDMAr)

thank you Justin

Hello. Chronic pain has been part of my life since age 14. I am 60 now. Not much of a group person here, but thought I'd give this a whirl. I've already posted in the stroke group. Large R cerebellar stroke, almost 3 rears ago, resulting in disabilities and head banging pain in my....ummm....head. Been reading the trigeminal posts. Atypical TN here, caused by nic in nerve during removal of salivary gland tumor. RA patient, both knees replaced. Had TOS (thorasic outlet syndrome) with bloodclots/eneurysm (sp?) Surgery done, 7 1/2 hours, 2 ribs removed, 1 scalene muscle removed, and one shiny brand new artery patch. Not proud of my medical history. But by sharing reasons for ongoing, unrelenting pain, any suggestions might, hopefully, be more specific. My body has betrayed me from head to toe, inside and out. It's funny, but I spent my life running, walking, trampolining, doing aerobics, as much to stay healthy as because I liked to exhaust
myself, exercising/sweating/strengthening. Forced to stop at 52. My 2 fake knees, well actually everything from the waist down, abruptly began a screaming protest. Joint swelling, inflammation skyrocketted, forcing me to stop my beloved torture sessions. Which is what they had become.

I've had 6 kids, worked on farms for 24 years. Raising food and animals. Always had a sense of humor, learned to be pretty self sufficient, and resourseful. Been married for 40 years. I know how to bare the burdens, work hard, psyche myself out to meet whatever is thrown my way, with varying degrees of success. I am 60 now and feel like a broke down old warhorse. The conditions I mention at the beginning of this "book", lol, have sucked the life and vitality out of me. And thats just the ones i mentioned! My pain level is probably not unheard of, but it truly affects my quality of life. I am allowed monthly pain med, which seems to only scratch the surface. I go off about 10 days a month, so it will work again for the next 20 days without having to increase dosage or mgs. Have been on same dosage for 2 years. 10 hard days, but worth it for the productivity of my next 20 days. I am now caring for my 88yr old father, part time. I do not hate my life. I am richer than rich, and blessed beyond measure, just not in the ways of the world, if you know what I mean. I feel a bit like a loser relying on chemicals to help get through my days, and get anything done. Gabapentin and similar meds, didn't work. Lyrica and like medicines gave me black outs. My medical conditions could go into remission, which would suit me very well! But in the meantime I find the urine tests, appointments, pharmacist attitudes....though i have never had any type of flag.....and public shame for chronic pain patients, who dare seek relief from *gasp* opioids, a bit taxing on my general good nature and fairly healthy self esteem.

I guess this is not seeking answers to questions. More like blowing off steam, and telling a story everyone's heard a million times. Thanks for providing a platform for one to do that. I'm tired of pain, but at least I know I'm alive. I want to do much more than exist, which is why I take the meds. I do have a choice.

Edited to add: I will not feel offended if this type of post is not very welcome here. I realize all the above is in a round about way, support for the very meds the medical community would rather find a way around.

Jennifer, I appreciate you mentioning Thorasic Outlet Syndrome. I was found to have bloodclots in both arteries of right lower arm. This led to the discovery of an aneurysm in my shoulder and a diagnosis of TOS. By the time they found the aneurysm, I was in crisis. Then was sent to University of Michigan for a complete work up and they quickly scheduled surgery. They removed 2 ribs and my scalene muscle to get at and repair the artery. It took about 7 1/2- 8 hrs, and the recovery was long and painful. Long hospital stay. Long months of therapy. But if it had not been for the PA at my docs office I may not be here. The aneurysm was fast growing and very large by the time they repaired it. I have not found a TOS group here, so it's probably not very common. Point being, complications can arise which will take a sore shoulder and aching arm to a whole new level. If someone does not get a satisfactory diagnosis, this possibility should be persued. Since this progressed to a dangerous point for me, I would hate to not give at least a warning to anyone suffering TOS symptoms, so they can at least be tested for it.

Thank you Jennifer for bringing this little known, but nasty condition to light. 🙂

I'm Betty, I truly do not know how anyone copes with Chronic Pain. I have been in constant pain for several weeks due to a bulging disc and nothing seems to help. Also developed a UTI. Have appointment for another spinal injection Monday. Hoping it will help again for a long while. I'm about ready to agree to surgery, but it scares me. I'm 87.

Hi betty, you h-ve a lot goinh on. I agree on the injections bu/ what kind of surgery are you considers?

@liz223 , thank you for the welcome. I've had fibromyalgia 20+yrs. I has been real bad the last 8 or so yrs. It's everyday , bad most days . But I've recently been put on a med. that seems to be causing several side effects, one being headaches increase in stiffness and muscle spasms. Life's never been harder . If have the support of my sweetheart but my new difficulties are straining our close relationship. I have no other supporting people in my life . The thought of losing him because of these things has become an all consuming fear. I can't get back to where I was when I was at least coping with my pain and other issues. I need help but have not found it from my medical professionals. I don't know what to do to help myself. Feel everything slipping away. He gets upset to hear my weakness spoken out loud. . So thinks for giving me a place I can speak honestly. GOOD luck to each of you with you struggles.

@tdib
Welcome!
I am so sorry for what you are going through physically and now emotionally! It is never easy when one partner has a chronic condition and the other partner has to watch and help.
I've known my hubby since I've been 9, together since I've been 14 and married 45 years. I've had Fibromyalgia even longer than you, before most people even knew what it was. I've also had other chronic situations with my health. Even now, I've got physical issues that I've been dealing with for about 10 years. For sure, he has had to deal with the harder part of our relationship. And, when you have been together as long as we have, lots happens. When we get together with someone, we never know what the future will hold, but when you love someone, you need to take the good with the bad; it is not as if we want these things to go wrong. Have you tried to sit down with your sweetheart to have a heart to heart?
In the meanwhile, let me share what I did to help me with my symptoms. First, my doctor put me on a mild med to help me get into a deep sleep. Most people with Fibro do not get into the deep restorative sleep, which we need for our bodies to heal from the day. I fought taking this for years since I did not like taking anything more than aspirin. But I relented and it helped a lot. Next, I went on a diet. I lost about 25 pounds and that helped with the excess pressure on my joints (I still needed to lose more, but that amount helped). Lastly, I started to exercise. I know, there are days even getting out of bed hurts. I started my 'exercise' by just walking. I found a path to walk. Each night my hubby and I would walk. Halfway through, my husband would literally drag me to the end. Eventually, I was able to do it myself. I did NOT speed walk, just walk. Once I was able to walk, I started going into the gym and using the treadmill and then other equipment. It took time, but soon all my symptoms were gone. That, my friend, was more than 20 years ago. Now, the only time I have pain from the Fibro is if someone gets into my trigger points.
Hope this helps.
Ronnie (GRANDMAr)

@liz223
Good Morning,
I am so sorry you are suffering from such pain. I know how horrible living with pain can be. I've lived with chronic pain for more than 10 years. It leaves you emotionally and physically exhausted!
You really did not give us very much information about how you developed the buldging disc and what you have tried. Due to most insurance company policies, there is usually a 'protocal' of steps they take to deal with the disc and pain. An x-ray and MRI should be done to pinpoint the issue(s).
1. PT is usually the first step to try to build your core.
2. Pain meds for a brief time to help take the edge off (although these days, that might not be so).
3. Injections (anything from trigger points to epidurals and everything in-between. It is best to get these shots from a pain management doctor who has experience, since it is often difficult for them to hit the right spot.
4. When all else fails, surgery.
Never rush to do surgery. It is the last step when all else fails. As I said, I lived with chronic pain for over 10 years. It was just one year ago that I decided to seek out an alternative to shots because they no longer worked. I was 63. I had 2 surgeries. The neurosurgeon replaced 2 discs in my cervical spine. Then, about 7 months ago, he did a X-lift fusion on 2 lumbar discs. The first surgery went well and I recovered quickly. The 2nd surgery also went well, but the recovery was long and very painful! I am happy to say I no longer have the chronic pain (except from osteo-arthritis). I now have another issues coming from my spine, but it is not causing pain.
I guess what I am trying to say is try other steps before jumping into surgery. Surgery is not always the answer, either. Many surgeries are not successful.
Once you have surgery, if that is the way you go, you have to change the way you do things in order not to ruin what the surgery has accomplished. Although you might feel well, it could take 12-18 months before everything is 100% healed and the settled. That means....no lifting (anything more than a gallon of milk), bending, reaching, twisting, sudden moves, etc. You'd be amazed how often we do these things without giving it a 2nd thought.
Well, I hope this helps.
Stay strong!
Ronnie (GRANDMAr)