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- Chronic Pain (https://www.neurotalk.org/chronic-pain/)

- - Severe pain (https://www.neurotalk.org/chronic-pain/21745-severe-pain.html)

Hello, I am wondering who else out there is living with very severe pain 24 hrs a day and how you deal with it. My pain has been chronic for so long that I have no memory of ever being without it. Now it is at the severe level due to degeneration and I only know one other person who has any idea what I am talking about. Most people shy away from here because they can't stand the sight of it and I understand that. It isn't in just one part of my body but all my joints and I try meditation to block it out but it's hard to even have a conversation with another person. Any one else out there dealing with the same?

I'm so sorry. . .

Lily, I'm so sorry that you are dealing with such severe pain. I can relate somewhat as my pain meds only can do so much and on certain days and nights (especially nights) I have had pain I consider, "severe". I have Peripheral Neuropathy in my lower legs and feet and have dealt with the pain for about seven years now. I see a pain specialist every month and take methadone (best for neuropathic pain) 4x a day and percocet for breakthrough pain. Even with that, there is pain 24 x 7.

Do you have a pain specialist? What does your doctor say? Are there any pain support groups in your area?

I'm sure those here could be more helpful with more information from you. (If you've already shared it and I missed it, I apologize.)

Take care,
Nancy-H

I am soooo sorry that you are living with so much pain. I do know how awful that is. In the last five years, I've had one morning when I wasn't in pain, and that only lasted for three hours. I still don't know what blessed me on that one day.

It sounds as if your pain is worse than mine, at least on a continual basis. I always have pain, and I take very strong medications to help control it. But every so often I have a major flare that can be so bad it makes me feel like I'm going out of my mind. And when that happens, no amount of medicine helps. So yes, I do know how that kind of pain can affect you.

Believe it or not, the one thing I've found that helps best is to get online and chat with one of my buddies who I've forged a bond with. The chance to vocalize my misery and their understanding always helps divert me away from the pain for a while. And on days when they need someone for support, I am there for them as well. It may sound rather weak, but it does help me, even more than any medication I take.

I do so hope that you find some strategy for dealing with your pain. Just remember, there is a limit to how much information can be transmitted by the spine to your brain. Anything you can do that uses up more of that limit will lower the capacity of the pain to get through. And that is the truth.

With All My Best Wishes,
Idealist

I am also a Peripheral Neuropathy patient - for over 20 years - with constant moderate to severe pain with the worst being from my knees down. About 5 years ago we tried the Duragesic Patch (all the other stuff we tried had failed) and after titration to the 100 strength patch, my 7 to 9.5 pain levels went down to a very tolerable 2 to 4 level. I am now using one 100 strength patch with one 25 strength patch and changing them every 48 hours. The resulting lowering of the chronic and constant pain is allowing me to lead a relatively normal life. I even walk (with my cane) 1 to 2 miles daily and drive my car without incident. This medication has never made me feel 'high' or zonked out or anything like that. The only side effect I have is constipation which I control with over the counter stuff from the drug store.

I am now 75 years old and my hands are steady, my mind in clear, and I function quite well and am enjoying life. I am dependent on the patch but not addicted - a huge difference. The Duragesic Patch does not work for everyone (what does?) but is certainly worth a try when other meds fail. I found that I needed a pain reliever in my 'system' 24/7/365 and that this medication worked for me without having to remember to take pills 2, 3, or 4 times per day.

I sincerely hope that others with chronic moderate to severe pain can achieve the same results. It's more often than not a question of finding a good physician that is willing to "take on" a patient with chronic pain from whatever the cause. They are hard to find but they are out there and believe it or not, more and more physicians are learning that chronic pain is indeed a legitimate medical condition deserving the best that the profession has to offer. I hope all of you have such a physician or will soon find one. Good luck.

what is your pain from . Injury , headache etc.

razzle51 - if your question is directed to me, then, the cause of my pain is from Peripheral Neuropathy. Almost all PNers have pain ranging from mild to severe. The cause of the PN was never found and I've been tested for literally everything - so - the word "idiopathic" (meaning: cause unknown) was added to my diagnosis which is: 'Idiopathic painful sensory peripheral neuropathy with constant chronic moderate to severe pain'. I have been tested and retested along with lots of "second" opinions.

No its to Lilly the one who started this thread :)

There is help out there for pain.

Warning..I am too lazy to proof read this..so please read past the typos.

I am in severe pain 24/7. My recommendation to you, if you have not already done so is to find a top-notch pain management specialist. I am not talking about someone from a local hospital, but rather a well-credentialed one from the nearest teaching institution. You did not mention the source of your pain. I have a neurodegenerative disease and as a result, I have two types of pain. One I have what they call in laymen’s terms – real pain that radiates from muscle spasms that I get in several major muscle groups from dsytonia. Because of the nature of my disease, I also suffer from neuropathic pain. This is pain that you actually feel – but there is no real injury of area of damage. Your brain is just sending out a pain signal that feels exactly like you are injured.

I have a intrathecal pump the delivers medication directly to my spine. This way I need less medication and what I take is more effective because it does not have to cross the blood brain barrier. With the pump, you only need to take 1/100th of the oral amount you were originally taking.

I also have a Spinal Cord Stimulator, this is a device implanted in your abdomen just about where your wait is. My stimulation has two leads that go up to my spine and deliver a mild electrical impulse the interrupts the one that your body is trying to send up to your brain. I would say that the stimulator was also to cup me pain by 50%. I have a hand held remote that allows me to increase of decrease the electrical signal. The signal feels like the feeling you get when you sit in one of those massage chairs. I find it to be a pleasant vibration.

I also take oral medication. For neuropathic pain, I take Lyrica. I have found that fentanyl is the best narcotic for neuropathic pain. When I have problems I use the fentanyl patch and in emergency break thru situations I use either Actiq or Fentora.

There is no need to be in the pain you describe. You need to find a good doctor the specializes in pain,

You're not alone

I have pretty intense pain pretty much 24/7 also. Every month or so it seems I get a break enough to at least wash my hair. I take strong meds, but my body seems to metabolize them like water - and always has.

It gets very loney and depressing lying in bed for days on end. It is demoralizing to have to urinate in a trash can when I can't get to the toilet. I watch a lot of tv to distract me unless I get a migraine and then I just whimper in the dark.

I think there are more of us that people realize since we are basically shut ins. My pain is specifically from my spine and down my left leg which feels like people are holding a constant barrage of sparklers against my skin. I always have head pain, but the level of that varies more than my back. I get about 5 head cracking migraines a week now. Sometimes I just want to get an ax and cut off my leg or at least break my spinal chord. I know that sounds terrible, and I won't be doing either, but desperate, neverending pain causes desperate thoughts.

Do you have an autoimmune disease by any chance? It sounded like you miight. I desperately hope one day they find the answer and you get some peace.

Suzanne

Sorry you are dealing with so much pain.

I suffer with high levels of pain 24 hours a day every day of the year and have been dealing with this for a number of years due to spinal deterioration. Find a good pain doctor and the way I make it through is to deal only with today. If I look back at all the pain it is too much, if I look forward to every future day with pain it is too overwhelming but for today I can make it through all the pain.

Even with strong medication some of us still suffer with alot of pain and there isn't much more to do than deal with it for today and get as much out of today as we can.