[Noodly Appendage]

This is a heavy response, so I apologize in advance if it's too much. I am pretty self reliant, a lurker on this board. I rarely post. I'm just really down to the wire here.

I'd like to hear how people suffering from pain so bad it's ruined, or is ruining, their life cope with the pain. I do not have family or friends (sad and pathetic as it is) so finding strength in others wouldn't work for me. I see a therapist and have tried a host of ssris and nerve drugs. All have failed. I'd like to hear from anyone that is also facing hopelessness, or was and got past it, or just dealt with it. Never getting better...

My pain averages btw 7-9 out of 10 every day day of my life. I've tried almost every treatment up to surgery. Not a candidate for surgery because NSurgeon can't pinpoint source of pain. Since disc injections have failed, this indicated to him operating may not help. Radio Frequency, failed. Can't get PK from docs so having to get them from outside sources, and this costs a fortune. Not to mention it is not a solution.

I have alot of life left. I'm only 32, used to to be fit. Now I'm still thin, but weak. Have to drop out of grad school. Looking at leaving my job.

After 5 years of back erosion, the quality of my life is such that I'm having serious thoughts about the continuation of my life. This is not a case of hoping I'll get relief and just staying alive long enough for that to occur. It's a matter of being able to live with this kind of pain for the rest of my life.

How do others here deal living with severe pain?

[Dr. Smith]

coping with intractable pain

There are also other threads about this specific topic, mostly in the Chronic Pain forum, e.g.:
Dealing with chronic pain... how do you cope?
Pain wearing me down...any ideas what I can do?

There may be more—try the Search facility.

If you haven't yet, I recommend reading The Intractable Pain Patient's Handbook For Survival

Like you, I've been told I'm inoperable, but for a different reason—the arthritis in my spine is too advanced/severe for surgery.

My own methods are pretty much about distraction—one day at a time—whatever it takes.

Coping with Chronic Pain

Doc

[heatherg23]

Hi,
I know how life can be.....harsh!! .I'm 37 and have been in constant pain for 21 years. I don't really go into this much detail but I wanted to respond to your post. You're not alone everyone on these board will listen

Here's my lengthy story (sorry, it's so long)....besides severe back pain (2 sep back probs) I have RSD which is a condition that makes it feel like my skin is burning-leg and foot -right side only. Caused by a freak accident. I also have arthritis in every disc in my neck that causes migraines...since 2003, had a spinal fusion at that point. I've had several other painful conditions over the years that are resolved and now I have the 3 I just listed.

I can't work, not since 2005. I have to live with my mother. I have to spend every second laying down on my bed. That's because of the back pain and RSD.

How do I survive it all? I have to stay busy every second or I think about the life I now have. To keep my mind off of it I have hobbies that I can do while laying down (knitting, crochet,) I learned right after my 3 back surgeries in 2006 which is right before I stopped working (due to the RSD). I am known as "the one who's always in pain". I pretend like i'm fine I don't show my pain to others. It's very isolating.

You mentioned friends and family.........It's hard when the pain takes over. I have 1 true friend. I've been treated badly by 2 of my so called best friends whom I've known since I was SEVEN and I'm no longer friends with them. Because of my conditions. It's hard.

I tell people my life is a balancing act. I have to have enough good things to out weigh the bad. The good things: I have 2 small dogs that definitely keep my spirits up. I don't know how i'd get through it without them. I also knit and crochet for charities. But I do feel like I have 2 full time jobs dealing with the pain and staying emotionally and mentally stable.

It's also a job figuring all that out. It takes time to find your "balance".
If you need to talk to someone, let me know
Heather

[Dubious]

Originally Posted by heatherg23

Hi,
I know how life can be.....harsh!! .I'm 37 and have been in constant pain for 21 years. I don't really go into this much detail but I wanted to respond to your post. You're not alone everyone on these board will listen

Here's my lengthy story (sorry, it's so long)....besides severe back pain (2 sep back probs) I have RSD which is a condition that makes it feel like my skin is burning-leg and foot -right side only. Caused by a freak accident. I also have arthritis in every disc in my neck that causes migraines...since 2003, had a spinal fusion at that point. I've had several other painful conditions over the years that are resolved and now I have the 3 I just listed.

I can't work, not since 2005. I have to live with my mother. I have to spend every second laying down on my bed. That's because of the back pain and RSD.

How do I survive it all? I have to stay busy every second or I think about the life I now have. To keep my mind off of it I have hobbies that I can do while laying down (knitting, crochet,) I learned right after my 3 back surgeries in 2006 which is right before I stopped working (due to the RSD). I am known as "the one who's always in pain". I pretend like i'm fine I don't show my pain to others. It's very isolating.

You mentioned friends and family.........It's hard when the pain takes over. I have 1 true friend. I've been treated badly by 2 of my so called best friends whom I've known since I was SEVEN and I'm no longer friends with them. Because of my conditions. It's hard.

I tell people my life is a balancing act. I have to have enough good things to out weigh the bad. The good things: I have 2 small dogs that definitely keep my spirits up. I don't know how i'd get through it without them. I also knit and crochet for charities. But I do feel like I have 2 full time jobs dealing with the pain and staying emotionally and mentally stable.

It's also a job figuring all that out. It takes time to find your "balance".
If you need to talk to someone, let me know
Heather

Sorry to hear of your plight. Heather is right. You have to stay busy at least mentally if not physically. Ideal time is deadly and only compounds the problem. I've had RSD (CRPS) since a botched 2008 shoulder surgery that caused significant plexus damage and CRPS. Any hobby/activity you can find that helps pass time and distracts you from thinking about your situation is beneficial, possibly even productive if it helps pay the bills!

[ginnie]

I am sorry you are having pain issues due to your back. May I ask why your doctor has not permitted you a narcotic? It isn't the end of the world for a person to have to take them for quality of life. It is a serious issue, and your physicians should address your pain and do something. Can you go to a pain clinic? Did your MRI say anything of note at all? I had pain like that until my own surgery, so I do know what you are feeling. A physiatrist is also a type of physician that deals with the whole person and often thinks outside the box. this is the type of doc. I see. I do wish you less pain, and hope you can find some help. Don't give up, there are doctors who do have compassion. You just have to find him or her. ginnie

[jenng]

except to say that I have been in that frame of mind, "is this really the rest of my life?" It's a hard place to be. I suppose you have to find that something that keeps you tethered to the world, that can pull you back when your thoughts turn really dark. For me, it's my kids.

I have a lot of anxiety over my condition, what's causing it, where is it going. Traditional therapy doesn't really work for my kind of obsessive thinking/health anxiety. Cognitive behavioral therapy, basically learning tools to redirect your thoughts seems to be the best answer. It is a daily struggle. It does help to take each day as it comes, set goals for the day, and give yourself positive strokes at the end of each day for making it to the end.

[Noodly Appendage]

Doc,
Thanks for all the links and info and the book. I've been wanting to find some coping methods so I will def check those out.

Heather,

Your story is very tragic because you have actually had the surgeries and they failed. I also have a host of other problems too but nothing I'll whine about here. I know what you mean about lying down all the time. Today I went to work and managed not to leave early, which I often do. All can think about all day is lying down. Like you I don't really talk about it, so people are so surprised when I tell them the level of severity. Even then, they don't get it. I admit I never got it b4 I was in pain either. I appreciate your comment about the friends thing. I'm so conditioned I associate every situation with pain. Just thinking about going to a museum makes me cringe (and I love museums). I guess the few I did have I pushed away, mostly because I wanted to go home and lie down. I hope to find my balance. I've have to give up everything over the past few years. I'm sure I'm not the only one here.

Ginnie,
The narcotic issue is something that I struggled with for years to no avail. At first no matter what level of pain I said I was in the doc would never give me anything. I been to 4 pain clinics and had MRI and CT. Tramadol is as high as I've got in 3 years, except one time I got 12 percs from the ER. In NY state docs are limited to what they can prescribe and it all goes into a state registry. I do see a psychiatrist regularly, and he'll do the nerve drugs among other I get, but no Pain killers. It's just sickening to be treated like a junky. I have had many dif doctors give me different types of injections, and even then they still think I may be med seeking. I truly don't even even use them recreationally. No pain, no pills. Alot of abusers ruined it for those of that need them for real.

Jenig,
I'm glad you have you kids. I'm incapable of dating or meeting a significant other but I really wish I had someone like that. I took it for granted in the past and now I have many regrets. I was in behavioural therapy for a while but had to go back to regular because my depression has gotten so out of control I can't function. I hope to get back to the point where I can start working on my many psychological problems. If only I could get a new spine.

Thanks everyone.

[ginnie]

I wish they would do more for you. You are also correct, the few bad apples spoil it for the rest of the folks who really do need pain medication. I am taking tramadol also. I try that as a first line of defense. If that doesn't work I do have stronger which I try very hard not to take. My pain doc. is dealing with Fla. which is so conservative. I actually feel sorry for the doctors, as they are under so much pressure not to give these meds. out. It is getting worse, and I do worry for those not getting the help. That depression sinks in, and makes the whole situation worse.
Have you tried a physiatrist. Not a doc. for the emotions. This kind treats the whole person, not just the symptoms. Mine does prescribe a narcotic, and already knows I am careful. Hope you can find more help. ginnie

[Dr. Smith]

Originally Posted by Noodly Appendage

I do see a psychiatrist regularly,

Yes, I think you mis-read/understood Ginnie.

What is a Physiatrist?

physiatry

Doc

[Hopeless]

Dear Noodly Appendage,

It sounds like help might be available if the source could be defined. Sort of like having weeds in the lawn and treating with an herbicide and they persist. If the type of weed is not properly identified, the wrong herbicide is used, and the weeds persist. Until you locate the source, your treatments may be ineffective.

I spent over 30 years trying to get a diagnosis. All forms of treatment were ineffective. When the diagnosis finally came, the damage was too severe for any treatments to be effective. I spent 5 more years WITH a proper diagnosis but no treatment that would help. Then I found a doctor that was willing to try a procedure that NO ONE had ever even suggested. It is helping. It is not a cure but it has lowered my pain levels a notch or two and lessened the frequency of those 9's and 10's. My point is do not give up hope. You never know what might be just around the corner. I did not find any relief until just recently and I am happy for 7's instead of 10's. I am also very lucky that my high pain levels are not "constant". My levels vary throughout the day.

Pain will cause isolation. Who wants to be out and about with friends when they are in pain?

I hope you can find the source of your pain and get appropriate treatment. Sometimes, that is not to be had, the culprit is unknown, and then the coping skills need to be developed.

There are times when I feel like my life has been taken from me and I want it back. And then there are times when I feel very lucky that my pain, my illnesses, and other medical conditions, are not nearly as bad as many of the sufferers I have met here. When I read here about people that have whole body neuropathies, I just cringe at the thought. I have trouble coping with the areas of my neuropathies, and they are limited to specific areas. I also have spinal issues. There is seldom a day when my back does not hurt but again the intensity varies. I can't be up more than a few hours at a time before I need to lay down.

It took time, but most days, I am glad to wake up and be alive. I am pretty isolated but I have friends. They live here on NT. Let us be your friend and support. We DO understand.