Topic : Living with Chronic Pain

Quote From: lisab165

I am a 40 year old with a wonderful husband, 8 year old daughter and 4 year old  son. I have had bulging discs at the L4-5 & L5-S1 since I was 21 and was usually able to control my pain with OTC's, exercise, chiropractics, and massage until January '04, when I fell roller skating. I have been through going to Primary physician, PT, 3 orthopedists, 3 MRI's (showed I haved bulges at L2 thru S1 and C4 thru C7, degenerative disc disease, and spinal stenosis), epidurals, 1 myelogram, and lots of meds. In November '04 found out from myelogram that I had a ruptured disc at L4-5 and had a laminectomy on 12/06/04 removing a 3cm piece. I did really well until about 4 weeks post surgery when I started the walking and pt.  My back pain is close to the pain level that I had before my surgery and still have pain in my low back, buttocks (left side and sometimes the right), and into my left leg (sometimes the right), heel and foot.

My orthopedist that did the laminectomy would never listen when I brought up the neck problems and the pain and numbness in my left arm and hand.  Finally, had an EMG done which came up positive for moderate carpal tunnel (didn't rule out radiculopathy) and he gave me a cortisone shot. That got rid of the numbness in my fingers for a couple of weeks but never the pain. I have severe pain and numbness that gets worse every day, in my neck, both shoulder blades, arms and hands. I have a very hard time eating, writing, crocheting, typing, and anything that requires any grip & have muscle atrophy and scared I may have permanent nerve damage.    I was let go from my job of 10 years on March due to my health and have filed with SSD (was denied the first time and have an attorney on it and they are continuing the denial at this time).  At this point I have severe cervical and lumbar pain and am very scared I will be paralyzed and/or lose the use of my hands.

My last visit with the orthopedist on 6/02, he told me he couldn't do anything else for me (you know, no more insurance!!) and that "no one would help me for free."  He sent me back to my primary for pain meds and she sent me to a pain clinic.  That doc currently has me on Methadone 10mg 4x, Robaxin 750mg 4x, Neurotin 300mg 3x, Nortriptylin 25mg bedtime, Prozac 20mg morning, and Percocet apap 5/325 for breakthrough pain (what is breakthrough pain?--the constant pain I have regardless of all the other meds?).  Have also been on Vicadin, Valium, Darvacet, Percodan, Flexural and others.    At this time, I have no insurance and don't qualify for medical assistance and I need medical treatment very badly and am suffering from depression and suicidal thoughts.  I really don't know what to do.  I applied for disability in Feb., was denied and have an attorney on it.  Got a letter a week ago and SSD is continuing the denial for lack of info.  My orthopedist, due to not listening to me, put in my medical records that I was getting better (the actual disc that he did treatment on, not all the other problems that he wouldn't address!) and SSD says that I should be able to work full-time come 11-05.  There is no way I will be able to do this and need to at least get a consultation with a "good" doc, one that will actually listen to me.   I have called the ER close to me because I am having so much pain in my left arm I am that desperate, but we don't have a doc close to here that would be able to help me and they would only be able to give me pain meds.  Lot of good that will do.     All that I can pray for is that soon I will get in touch with someone that knows someone that knows of a program or somthing that I will qualify for and can get some help.  I am so tired of calling people to see if they will take payments for treatment, but, everyone wants full payment up front.  If I can get fixed and make payments, I will be able to go back to work to pay it off.  If I wait too long, I will be permanently disabled and no longer to even think of going back to a normal life and working.  I guess only God knows.  Thanks for listening!!    LisaB From Missouri (Misery?)

Quote From: valfarr

Hey sweetie, you generated alot of people to testify and share thier woes, wish you would have gotten more ideas on the money need though. I am also fortunate enough to have a husband that I met at 16..and we seperated for 5 yrs..met and married first husband in that time that actually caused all of this by one punch to my jaw. Before that I was a perfectly healthy, took on the world person who could do it al!! When we got back together I weighed 78 lbs, had had 20 surgeries to my jaw and did not look one bit like the girl/woman he had known. I was headed to Texas from Ohio for a surgery I had a 10% chance of making it through..when he found out I had noone to go with me (my family thinks I'm a hypocondriac..like with HMO's and Medicare that is possible in this day and age..and weight and atrophy was probably a pretty good hint I was pretty sick) he demanded to go. He went through it all with me, and has never left my side since..and it has been an adventure!!! I went through 2 surgeries in '99 to remove nickle jaw that was poisening me..down to 68lbs and atrophied again, and had a 20% chance. The new jaw has been broke for 4 yrs..and still waiting to have replaced..but God is a wonderful archetect to be sure. In the mean time we have had two beautiful miracle babies (I was told at 12 I couldn't have any..and they were both emergency c-sects and one had to be reseitated..they are MEANT to be here, without a doubt..and they keep me going, as well as my Husband who I also beleive God put back in my life to make it happen). I actually just talked to him the day before yesterday about pain meds for myself..I started Youth to Youth for drug free lives when I was 11yrs old, with 5 other people(still going strong) and worked w/14 other programs to battle drug abuse, but with this last illness, I caughed from sept to feb fighting something the antibiotics just seemed to keep at bay, the day my dosage ran out, 24 hrs later I came down with the strep pneumonia, and litterally appeared to crash over night. The jaw moved agian, and this time, the pain is too much even for me..I saw how many people said push it aside, and I have, trying to stay true to my  "calling" as it were, but I'm not me anynore in this much pain. That's why you wrote in...it's starting to change you too. I've become short tempered, more tired, and I'm finding myself shutting down, not talking to people, thinking things I would't normally..like how unfair it all is. I swallowed my pride, callled my Doctor today, and told her I was ready to go on meds, that this is too much even for me. She didn't hesitate, and we are going to start on Oxycodone5, so I can add tyl/ibu as I feel I need (most have tyl in it, like Hydrocodone,Percecet, etc..they don't work anymore on jaw, but do on other things as needed, and why take tyl when you don't need it. I also have more control with it, because it works quick, and that's good, because husband has to be home, won't take if by myself w/kids and can't have any chance of driving..so I will suffer until circumstances are right, so working fast and right where I need it to the most..good. I am holding off on Oxycontin only because some teenage/young adult nieces and nephews I raised for 8yrs..appearently didn't agree with my way of life and what they were taught in my house about drugs, and would rob me to get it..sad, huh? Otherwise I would probably do it..but would need two weeks to get use to, so I could feel comfortable alone with kids and driving..I was on it through the last 4 surgeries and recovery and it really is amazing pain med. You don't (after a week or two) have any type of wierd "buzz" feeling, you are in complete control..and it just goes to work on the pain, and does it well. When my Doctor's put me on it, nobody had ever even heard of it, even Pharmacists and other doctors, but within a year I was dealing with the abuse end of it through my work with drug free programs and awarness groups, and am amazed at how the problem is increasing..of course these are people who break them, destroying the time release, and snort, swallow and shoot up...they do it with alot of things, but it is so sad, for them and the people who could benifit from such a pill that works 12hrs and lets you have a life agian, as they destroy thiers with it. If you can talk to your doctor, and you don't have any of those fears..I've given you 2 options   in which you can hopefully come up with something that is not about to be taken off market soon anyway(Vioxx and Celebrex..why get started on something they are soon going to make unavailable and can add to your problems). I'll let you know how it is going, because my pride is hurting..but not as bad as my body, and I don't want to let this beat me in anyway, physically or emotionally, which is what it is doing now, like I said before, quality of life is everything,too. I wish you well, and if I can, I will talk to a friend of mine in a couple of days who works from home and just bought new house, and find out about exactly what it is she does and how she got started. Really consider SSDI, it doesnt matter what your Husband makes, it's what you paid in, and it is your right to get it back..it takes a while, so I will get back w/you so you can try to hopefully make some money in the meantime. I think you already know to put it all in His hands, which is why today of all days, I looked at message board for the first time, and you were the first thing I saw, as I was warring with this decision about meds..He works in mysterious ways indeed! So thank you for reaching out, and being there for me, so if there is anything I can do for you, let me know. I'll be in touch when I get info and let you know how new med is working out. God Bless, Valerie   

Quote From: sharitx44

I was always active and 3 years ago I became crippled with a disease called PLS, primary lateral sclerosis. This is agonizing. My legs and feet feel like a toothache and my feet feel like they are burning. I can't exercise very much but I try.

Quote From: jen3799

I am 44yrs old and I too live with chronic pain everyday. I have degenerative disc disease and  I have had five surgeries between my neck and back in the past 2 1/2 yrs. The last being eight months ago. Living with chronic pain is a nightmare, the pain before a surgery is excruciating, the pain after the surgery is somewhat deferent, but still pain. My next surgery is in 2months. 

 

I am not the same person I used to be. I was happy, healthy for the most part, working fulltime until I was fired a year ago for being out on to much medical leave due to my surgeries. Since then it has been constant pain, depression, surgeries, medication, loss of friendships, connection with the outside world. My husband and daughter have been there through all of it with me, the good, bad, and totally ugly!!!!  

 

Let's support each other!! 

Jen 

 

Quote From: splitends

I have een dealing with pain for about 10 years now with the past 5 years increasingly getting worse.  I feel terrible I feel weak I feel hopelessly lost in the shuffle of doctor to doctor and each one giving a different pill instead of trying to find the exact cause and treating it.  I HAVE given up in the past only to come back with a vengance knowing that my ONLY advocate in my daily pain was MYSELF.  I have THREE absolutely beautiful wonderful loving children.  I am a single Mom trying to live my life like I did 15 years ago and its VERY trying when some days I get out of bed and literally have to drag myself through my day oly to find myself so exhusted that I cannot do another thing and HAVE to lie down and sleep I tell my family "just 20 minutes, thats all just 20 minutes".  You know I was so active, fishing in the gulf, rollerblading, biking, water skiing I loved doing things spur of the moment invites were always my thrill but now I feel so bad that those spur of the moments are few and very far between.  Alot of times I make plans and when the time comes I end up cancelling because I just in too much pain and FEAR the consequence of "just doing it".  Its very hard I am a hairdresser and have cut back to about 15 hours a week, I have had to break here and there for a few weeks but the salon I work for THANK GOD, is so wonderful and understand, for the most part, what I am going through.  You know you go from being an active sport invloved outgoing fun loving person to this person who shines on the outside but is literally dying on the inside.  My smile is not the window to my soul but the mask that I hde behind.  I hate talking to people about my situation, I feel that they think I am making it up simply for the fact that they CANNOT see my pain, I looks SO normal.  I hate that I am always feeling guilty, that my sone wants and begs me to do things with him that sometimes really I just havent got the energy to do.  When I do do things on a bad day, out of guilt of course, I get SO angry, my family takes it, but its not fair my anger is not BECAUSE of them but BECAUSE I just DONT understand WHY I have to be like this.  I was always the one who was there for everyone, I took care of my grandmother for years and watched and sat at her side as she slowly slipped away with alzhiemers and eventually died I was at her side holding her hand telling her it was ok to let go.  I was at my Aunts side when she finally released herself to the Lord with Lung Cancer I sat at her bedside holding her hand and we just gazed into each others eyes as if we were communicating through the touch and eye contact.  I have been my familys nurse, peacekeeper, taxi, caretaker I have had days where being out running around for everyone was my priority and holding a 40 hour a week job and raising my two older children at the same time.  NOW I can barely get myslef out of bed, I crack and creak with every movement, I have so much despair, I feel SO lonley yet I have all this love surrounding me.  I feel so EMPTY its like I sit in my house and watch the world LIVE before me as I sit in the window WISHING I could be a part of it.  I miss it so much.  I miss feeling good I miss waking up refreshed in the morning ready to tackle the world.  I miss enjoying going to work which to this day IS MY PASSION I LOVE doing hair I LOVE my customers I LOVE making people feel better............WHY cant anyone give to me what I have given for SO many years?  WHY does the Lord feel that I have to go through this?  I ask WHAT DID I DO WRONG?  Then I have to think and say that someone will find out and treat me someone will get me on a level where I can function but I am so depressed just getting to that point already.  This is a novel I know but like everyone that lives with this you want to tell the world how and what you are feeling but words cannot describe the pain, mentally, emotionally and physically that you go through.  They dont know the shell of a person that you feel like.  They dont know the smile you wear is just a mask and underneath there are tears and pain and loneliness.  I have had three car accidents ALL from the rear, I had thorasic outlet syndrome with surgery in 86 after the birth of my now 20 year old daughter, yes this accident happened WHILE I was pregnant with her, I had another accident, ANOTHER DRUNK DRIVER hit me from the rear while sitting waiting to turn into my husbands work, I had neck surgery in 2005 a forminotomy at C5-6, I have disc protrusion at C 6-7, fibro, arthritis, depression, anxiety, GI problems with acid reflux, and we are going through MORE tests to find a way to make my life a little easier to live and the sad part is I am ONLY 46.  This started back in 1986, thats a long time to be dealing with pain.  But I have to say these past few years have been the worst to the point I DID almost commit suicide but through the love of my family I didnt.  Its a great loss when you lose someone, its a greater loss when you lose yourself, when you become this person you dont know, when you look in the mirror and see the same person but the body is saying NO, its a very hard life, its a cruel road to have to take and you HAVE to be strong FOR YOURSELF or you WILL lose this struggle you WILL fall and you wont be able to get up.  So I just want to tell everyone out there that is suffering to HOLD ONTO WHAT YOU HAVE LEFT.  TRY TO FIND A POSITIVE IN YOUR LIFE THAT GIVES YOU THE STRENGTH TO PUSH FORWARD.  DONT LET the window  you are looking out get so dirty that you cant see, vision yourself there have faith in yourself and do it for you.  Focus on YOU.  My hugs (gentle hugs!) are going out to each one of you.  We are a minority and its a tough battle to be heard but your voice is the only one that can speak what you feel let it be heard scream it out MAKE THEM HEAR, dont give up......

Quote From: curlycat

My partner has severe arthritis and degenerative bone disease in her cervical spine, complete with bone spurs. She hurts really badly all the time. The doctors she sees are very conservative with pain medication and consequently, her pain is not being managed. She is having a big battery of tests run this week and next - and is afraid they are going to advise her to have surgery to remove pressure around her nerves in hopes that it will help with the pain. I've never heard of that type of surgery being very helpful - and she is very afraid of having surgery, anyway. 

  

A couple of weeks ago, she had an epidural injection ( two different areas) that was supposed to help with the pain, but she was WORSE when she left the clinic and hasn't been the same since.  

The pain has increased since the injections. 

  

I don't exactly know what I am asking - I guess I would like to hear from anyone who has a comment or suggestion. Thanks  

Quote From: curlycat

My partner has severe arthritis and degenerative bone disease in her cervical spine, complete with bone spurs. She hurts really badly all the time. The doctors she sees are very conservative with pain medication and consequently, her pain is not being managed. She is having a big battery of tests run this week and next - and is afraid they are going to advise her to have surgery to remove pressure around her nerves in hopes that it will help with the pain. I've never heard of that type of surgery being very helpful - and she is very afraid of having surgery, anyway. 

  

A couple of weeks ago, she had an epidural injection ( two different areas) that was supposed to help with the pain, but she was WORSE when she left the clinic and hasn't been the same since.  

The pain has increased since the injections. 

  

I don't exactly know what I am asking - I guess I would like to hear from anyone who has a comment or suggestion. Thanks