Am I an illness?

hi,
It's 3:00 a.m. I have very literally had only one or maybe two hours of sleep per night for months with only two nights' exception. One day I CRASHed and slept for 18hours. I think it was that or die or lose my mind. I was SO tired. And then one other night, I slept for the whole night through. People keep saying "Take this pill or that pill to help you sleep." PEOPLE the problem is NOT that I can't sleep...sit me down anywhere for a few minutes, and I'll fall asleep. the problem is pain. It wakes me after 45 minutes or so...and is so bad that I'm up for the duration of the night. I'm not a great daytime napper either. Once in a blue moon I will fall asleep in my recliner for an hour...but that is not too common.

And yet, it is not the lack of sleep that is bothering me most. It's pain, pure and simple.
My spine is a complete mess.
I had an MRI recently that showed horrific damage to every vertebrae and disc...due to a degenerative spine and to Psoriatic arthritis that is destroying it as well. I went to a surgeon ...who had tears in his eyes as he told me, "I'm sorry. there's nothing that can be done...the damage is too extensive to be helped by any surgery." I was devastated. I was so hopeful that something could be done for at least the most severe areas of pain.

And then every other joint in my body hurts too...from, the arthritis. I've had one hip replacement and now need the other one to be done. My hands are completely twisted and deformed from this. Now it's in my shoulders, feet, ankles and elbows as well. I just hurt all over --in any position--even taking any medication. I've been on them all from Methadone, to morphine to oxycontin and oxycodone. Nothing really helps. And they are not worth the side effects for the minimal relief that they offer. So mostly I don't bother with them...except when I'm really desperate.

I don't like to moan and groan all the time or to talk about pain all the time...yet that always seems to be on my mind...and it is almost the totality of my experience. I rarely get out of my house..can no longer drive...and am usually in my recliner or hospital bed. I hate it that my life has been reduced to this. I hate it that all I am and all I know is pain.

Is there anyone else out there who feels like this? I do NOT want to become an illness. (I wrote a blog on this at
http://cvogelmusing.blogspot.com/2010/11/am-i-my-illness.html
Please feel free to visit there.

It is hard not to feel alone and like pain is your only "company" when you are stuck alone in the house with it 24/7 ...any advice? HOw do you guys guard against this?

i am so sorry for your pain. i know people and family members with back pain, and it is a very hard one. i am a big believer in holistic medicine, have you tried acupuncture or anything of that sorts? it may be able to help with pain. i know there are herbs and stuff, like even chamomile tea. i’m sure it won’t be a big help for your pain, but thought to throw it out there as a suggestion. if surgery can’t help you i am sure with research there is something that can. have you checked the other back pain posts here? maybe there is something there with new techniques that will soothe your pain. I will keep an eye out for you and see what’s out there. feel better!

thanks for your comment.
I don't think maybe you understand the level of pain that I'm talking about here. This is not the average back pain type of pain...This is the kind of pain that is so severe you think you literally will die just from the intensity of it. Morphine doesn't help. Oxycontin doesn't help. Methadone doesn't help/....these are all drugs given to people with end stage cancer pain.
I'm a great believer in herbs....I'm an amateur herbologist... and have hundreds of herbs here in my herb cabinet...and yes I've tried every conceivable combination of pain herbs ...with very little benefit. I did come up with an herbal combo which I mix with Epsom salts and use in a bath which is of some benefit...but lately I've been in too much pain to be able to physically get into a bath tub. And a tea made from valerian, hops, chamomile, lavender is good just to relax with when I'm in mental distress from being in pain.

No, I haven't tried acupuncture. I'd like to...but there are two problems;...I live in the "sticks" and there are no practitioners of acupuncture around...and also, my insurance won't pay for it...and I can' t afford the expense of it.
What I REALLY think would help would be massage therapy...but again, cost is a deterrent.
I find heat therapy to be comforting, even if it doesn't lessen the pain. So yes, there are holistic avenues which may be helpful, or at least, soothing , but which are not possibilities.

Thanks for your encouragement and interest...

Feel better. i’m sending you good thoughts to get through the pain and hope that something will come up soon that will help with the crazy pain. Keep using/doing whatever helps. if i see any research out there i will send it your way.

Victoria,
I just reread my last response to your post.
Sorry for the testiness of my answer. I did not intend for it to sound the way it did.
You were and are very kind to be concerned and to offer your support.
Thanks.

cynthialottvoge… - you were not testy at all. I’m sure when you say you have pain a lot of people don’t understand how severe it is so they probably tell you to take an aspirin. unfortunately not a lot of people understand what you are going through, but know you can always write here when you need to vent or are looking for support.

qadosh2him, to answer your question 'am I an illness?", NO you are not an illlness, nor will you ever be. You are first & foremost a person. You HAVE an illness, as severe as it is. I know it sometimes feels as if you are that illness with the way people look & talk to you & how your body feels, but believe me you are not that illness. The illness is just one part of you. You have more parts that make up who you are. I also deal with severe back pain though it doesn't sound as bad as yours. I have scoliosis, Spinal Stenosis & Arthritis(osteo) I don't know how I manage but somehow I do with no pain meds. Not saying that's the way for everyone just for me. I do hope & pray that you find some relief. Have you tried Biofeedback or meditation? Just a thought. Starhope

qadosh2him,
Hello
I am new here too. I also have spinal stenosi,DDD plus I need hip replacement right leg and the left leg is a year behind.
I started out with a diagnosis of bursitis 2 years ago right after my beloved Mothers death.
I had cortisone shots in my spine, the facets and in my hip and hydrocodine and bourbon.That went on from Jan 2009 until Sept 2010. Because of the grief,drinking and depression, I slept all winter oct-april(2010). In March I started working as a patient assistant. One day in June (2010)I woke up and could not walk so here comes the morphine. I stopped drinking in Sept when they put me on morphine. I was a very active person so that makes it harder.
Thanks for listening.
Peace

hi...
so how are you now?? are you still on Morphine? Can you walk now?? Are you still sober?
Sounds like you too have been through a lot.
I'm, having my second surgery on the one hip next Monday. Then they are replacing the other one 6 weeks later. that's all assuming that the hemorrhaging stops and the biopsies com back negative...That's the latest with me....

gadosh…oh my God in heaven please help…oh as a read your original post i was just about in tears. although my diagnosis is nothing in comparison i hear your cry and desperation about how bad the pain is. these past months i to have been there (not as bad right now) i was screaming out to God sobbing, if you want me dead just kill me, why are you torturing me? i don’t think i have any options to offer as it seems you have been trying anything that comes along but i can offer an ear to listen and if i was there hugs although when that kind of pain attacks there is nothing that seems to help. i’d offer to give you rub therapy if i could get to you. oh i’m sorry. i to for ssoooo llooonng figured i am nothing but my pain as it is all CONSUMING…it’s hard to get the pain off your mind it’s paralyzinf both mentally and physically. please do keep posting. yell, scream what ever will help…vaya con dios to you my friend…hugs from houston kathy

gadosh
i so afraid of the surgery
there are no guarantees
they want me to lose weight,stop smoking and wean off the morphine! The surgeon scared the heck out of me ,talking about sawing into my leg and pulling the socket out(braking it in half to replace it with steel? My legs were swollen so much they looked like they were ready to pop, and he is pushing on them and said to my daughter that i was so sensetive to pain because i was on meds for pain??? My GP had prescribed gaberpetin 1200 mg a day. Thats the only new med I had so I quit taking it and the swelling went down. MY PM doctor shot me up with cort,at this point i will stick with that as long as I can. I am sick of it all!

oh dugansmom sound just downright icky the surgery description. oh darl’in i to would be afraid of surgery (none on my radar just yet) i have a relative who had both hips done and she is 83 and it helped her tremendously. my mom had both knees done and again was great she could walk again with out all the pain (of course rehab was no fun she said) mom did the cort as along as possible also. i’m with you to. i will do all alternatives before surgery. i’m so sorry all this mess your going through. i’m on gabapentin and it’s been a lifesaver for the burning that would accompany the pain. i take 3600mgs a day. sweet thing i take offense to ANYONE who wants me to quit smoking…yes my dear i’m a fellow smoker (38yrs). could they not when you are hospitalized use a nicotine patch on you. i was in the hospital last month and had it. helped a bunch. but of course ripped that little sucker off before i hit the front door of the hospital on the way out and smoked 5 butts between there and home and it’s only a 5 mile trip. God bless you honey. big hugs to you kathy

hi wiffy and dugansmom,
My story has worsened...but I truly have not lost hope or given up on God or life. They now believe I may have ovarian cancer ...stage 4 or 5...and my hip has continuously been dislocating and so I'm having the hip replacement redone next Tuesday, in the midst of all the other stuff going on.

I cannot explain to you all the details about the hope that I have...or the joy...not here anyway...But I would refer you to my blog: www.cynthialottvogel.blogspot.com
Look around on that sight...Use the search box on the home page and look up "suffering" or "pain" and read the posts that come up...I hope they will positively affect you and help you to deal with the adversity in your lives.

It's true that at times, pain makes me desperate....And so desperate that I would do almost anything to make it stop...and because my pain is constant and nothing relieves it, I am not worried or sad about the possible diagnosis of terminal cancer. Nor am I scared about what I will go through prior...It can't be any worse than what deal with on a daily basis. I know where I will spend eternity...don't have a doubt about that. I have a relationship wiht a God who loves me wholeheartedly and took on suffering himself so that I would not be defeated by it ...He never promised we wouldn't have it...in fact he said that in this world, we would...But this world is NOT ALL THERE IS. And that has been my battle cry and my life preserver....

I hope you can find the hope, help and relief you so much need. God bless both of you...and feel free to write again if you want to talk again..
Blessings.
Qadosh

oh my dearest qadosh, my heart hurt for you so much this morning. i went to mass and begged and prayed for some relieve for you. in the past 14 months i have been where i thought that it was my end and i was not afraid at those moments. God gives us special grace. this physical pain i know for me has been the biggest challenge i have ever faced in my life and the times that it is so bad screaming for death. I will take you each morning with me along with all our fellow suffers of chronic pain. i send so much love and admiration for your courage, thank you so much. hugs from houston Kathy

Kathy,
thanks so much for the lovely thoughts, words and for the prayers...It does help to know that we are not alone in our suffering, doesn't it?...God has given us each other so that "we can comfort each other with the comfort we ourselves have received."

your sister in pain...
Cynthia

oh cynthia, i will be bringing you to mass with me everyday. yes, noing we are not alone in our suffering helps so very much. thank God for this wonderful online group of commasionate people. please keep us informed of your progress. again i am so deeply sorry for your suffering. your sister in pain and more importantly your sister in Christ. love and comfort to you my friend Kathy