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Pain getting worse

Started by lisa collins on 02/27/2010 5:57pm

Hi i'm new to discussion sites but felt i had to talk about how my condition is effecting me and how others manage their pain, as i feel at a loss with how to cope at the moment.
I have degenerative discs, spondilosis, fibromyagia,under active thyroid,Raynauds syndrome and cosachondritis!! What a wreck for a 41 year old!!
My problems started after the birth of my 1st son (I have 2, the olest 16yrs and my youngest has autistic spectrum disorder - he's 12yrs) which is 16 years ago, and i feel as if no one listened that much when i first started experiencing pain, its been so drawn out and hard work getting doctors to understand the extent of the pain and when they do you get more and more strong pain killers but no real understanding of how this is impacting on your whole life and no help.
My pain has become so widespread and this last few months the pain in the bottom of my spine has increased ten fold i'm pretty good with managing pain but this is really hard to deal with its so severe. I have been refered to a pain mangement program which i have to wait 3 months for!
What i'm wondering has anyone experienced the increase of severe pain in the bottom of the spine like i have and has anyone found the pain management programs helped in any way? Would like to know how others manage their pain.

Lisa

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Lisa:

I felt I had to respond to your post, since I have a lot of the same symptoms. I had a spinal cord tumor that was discovered in 1988. I had a laminectomy but that dr. didn't take all of it out, and there was a pocket left that was full of spinal cord fluid I had to wait 2 months for surgery with another doctor, and I was in so much jolting pain I couldn't even laugh! It was horrible. At the end, every time I went to sleep (or tried to) I'd get such severe spasms I would wake up immediately.

Anyway, to make a (very long) story short, flash forward to now. I am on permanent disability and have been since 1999. I have severe pain in my buttocks into my legs and feet. They tell me it's scar tissue and there's nothing they can do since it can cause me to get much worse.

Anyway, I got referred to a pain management dr. in my area and he says I have a serious problem (reallly?) and he thinks I should get a spinal cord stimulator. I am just waiting to have my psychiatric evaluation, and then I have a trial one for a few days. If that works, I'm going to go full speed ahead and get the permanent implant. My pain doctor is pretty nice, though he can be abrupt sometimes, but at this point I am sleeping with a pillow under my legs and have to load myself up with pain medicine before I go to sleep. Forget naps. Can't do it anymore.

Anyway, I think a pain management dr. is a good idea. i wish you all the luck. Post again after you see the pain management doctor.

Pam

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Dear Lisa, I have to strongly agree with the earlier comment; you need a good Physical Medicine Doc! Otherwise known as a pain control Doc .... I finally found mine about 6 years ago and she took me off all the toxic pain meds I was on and put me on pure old Morphine which was far more effective, less "medicating", and much better for the liver & kidney's for the long term... she has also had me on two Fibro drugs but unfortunately both were too heavy on the side effects, but nonetheless she is up to date on all that is out there and very empathetic towards what I am going through. I have lower lumbar fusion, S-1, L5, L4, with laminectomies throughout, stenosis, wretched facet joints, scoliosis, cervical fusion of C4, C-5 and Fusion of right ankle... needless to say I am totally disabled from all this and have been since I was 47..I am now 53... I had my fair share of crummy Doc's along the way..Keep the faith, YOU are your best advocate and again, look for a good pain Doc.. they are worth the search and can work with you to improve your life. I still have to have facet joint injections and such, but the right "cocktail" of drugs will help you get your life back!

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This might be random, but I would get tested for celiac disease. Its a pretty simple blood test, but you have mulitple diseases with high co-morbidity with celiac (gluten intolerance). I also have hypothyroid / hashimotos disease accompanied with several other autoimmune disorders and suffer from DDD and spondylosis.

While there is no known connection between celiac and pain, I have been on a gluten free diet for a year, and while my pain isn't gone, it stopped getting worse and I feel a heck of a lot better.

I know its random, but just a thought.

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Hi Lisa:

I feel your pain.....literally. I have fibromyalgia and all the fun things that go with it, as well as lower back and leg pain. I have had surgery on my low back a few times, and have a spinal cord stimulator (go to medtronic.com for info) implanted for nerve pain in my low back and legs. In addition, I take medicaiton (low dose of methedone) for my pain as well as other medications for my figromyalgia, all of which specifically do not make me tired during the day. First off, do you have a pain management doctor? That is the first step to getting in control of your pain and life as far as I am concerned. This is not a regular, everyday doctor that you see when you have a cold, this is a doctor who deals with people like us only. My pain doctor deals with my fibromyalgia as well as my back problems. From there, my pain doctor will refer me to doctors for specific problems. Example I was having terrbile memory problems and he sent me to a psycholigist, after doing many test which proved that my memory problems were due to depression (which you may also have), he sent the findings back to my pain doctor and he prescibed an anti-depressant, which also helps me sleep and reduces my pain. All my medications are dealt with by my pain doctor.

In directly answering your lower spine questions, your pain doctor should refer you to an orthopedic surgeon to take X-rays at the least. My whole point is that you need a doctor who keeps track of everything that goes on in your life. I hope this helps. If you would like to talk further you can email me at kimdoumis@garlandcapital.com

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Hey Lisa

I have alot of lower back pain but I am sure it is nothing like yours. I am so sorry for what you have gone through. I have been dealing with mine for 9 years. I do see a Pain Specialist and it was the best move I have ever made. These people truly understand what you are going through, they have treatments that other Drs. don't even think about. They even have you see a pain psychologist who are amazing people. NO ONE will treat like it is all in your head. They not only treat the symtoms but they treat the whole person. There was a time that I just got through the day, now I enjoy my days. In fact my daughter (23) just told me that I am going to be a grandma, and I went with her today to see the baby on ultasound and it's little heartbeat. With GODs good grace this pain management program will truly help you. I will pray for you and your family. If you need to talk I am hear and listening. GOD Bless

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Its been great to have such positive feedback, as the conditions i have can be very isolating and depressing. I hope the pain management works well for me and psychologically i begin to feel better. Its making sure i get accross to the doctors or management team to extent of my problems!

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Lisa, I wanted you give you a big hug and tell you, your not alone. I can empathize about your pain. In Oct of 2007, I got the body aches all over and thought it was the flu. Only it has never gone away. And slowly my pain has gotten worse and the flare ups stay longer, are more intense and last much longer. It feels better to lie down than to sit up. When I get out of bed and sit up my back and hips and legs hurt. I can't remember things sometimes even after someone just told me something. I am 44 years old and scared that I will be like this for the rest of my life. I've tried exercise that just puts me right back in bed for days. I sleep for days and then I feel better.

I didn't mean to make this about me, I'm sorry. What I wanted you to know is people who have this understand, believe, and sympathize. I have just started with my pain management specialist and we are at the trying different medicines. And keep trying until you find the right pain management specialist. Good luck, I will think of you and hope your pain starts to get lighter. And try to keep stress at a minimum (I am going thru a divorce so I have to find my happy place and go there for a little while you may have to also).

Hugs, Tina

ps it has me listed as a spine specialist, I wish that I was but I am just a patient like yourself.

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Dear Lisa,

I also have fibromyalgia, and have been struggling with it for years. Fortunately I was under the care of a rheumatologist who diagnosed me fairly quickly with fibromyalgia, and started me on medication. However, it wasn't until I was started on Cymbalta that I got my greatest relief. In addition to the fibromyalgia, I have arthritis in my spine, triggering something called facet joint syndrome. These are the actual joints that the vertebrae rest on top of, and the inflammation in the joint itself can cause inflammation in the peripheral nerves in the joint. This can cause acute pain when active, usually referred to the lower part of the back and buttocks.

I've been fortunate that I have several pain management specialists that are very knowledgeable and very empathetic to patients with chronic pain. I've gone through epidural steroid injections, which worked for a while, and now I get a procedure called radiofrequency neurolysis - I finally got significant (90% for me) relief from this procedure.

I know how debilitating and frustrating chronic pain can be - I've had it for 22 years now, and possibly earlier but undiagnosed. But now I'm getting the right meds and procedures to control that pain. I wanted you to know that you're not alone. Depression often goes hand-in-hand with chronic pain, and can often makes it worse (which makes the depression worse, which makes the pain worse - viscous cycle!). There are people here who understand chronic pain because they too live with it. I hope that your pain management specialists are as good as mine have been, and you find some relief soon!

Take Care,

Pam

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I VE had back pain the last 12 yrs my body in ammune to all meds . I just cry alot and hurt

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Hi Lisa- I really feel your pain! I am about your age, I have had back pain since my teens. After having a hysterectomy in 2006 I began having muscle pain all over all the time. I have chronic joint pain in my back, neck, shoulders, legs, hips and knees. I would complain to doctors but I always felt they thought the pain was in my head. I wasn't taken seriously and I became very depressed. A little over a year ago I was diagnosed with fibromyalgia, spondylosis and osteoarthritis. I was given a bunch of medicine that made me sick to the stomach or made me feel completely out of it. I started seeing a pain management specialist where I received a series of injections and pain meds which seem to alleviate some of the pain. The problem with the injections was that I was never pain free and it wasn't safe to get them for a long period of time. The doctor began talking about surgery which really scared me. I will continue to reasearch to find relief for my symptoms that doesn't involve surgery. I am still taking pain medication but I am still in constant pain. I have tried changing my diet, getting more rest and light exercising. Warm baths or about 20 minutes in a jacuzzi helps but only while I am submerged in the warm water. I always feel better when i can relax on the beach too. Not sure if that is because it is so peaceful there. I have always been very active and I considered myself to have a high tolerance for pain but the pain I have been feeling for the last year now is unbearable. Sometimes I question the doctors, do they really know what's going on with my body? I am unable to have an MRI and often wonder if something else is going on; I have too many symptoms. It seems to get worse everyday! I am so miserable! But not so miserable to give up looking for a way to manage my pain without having surgery.

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I have to be a big advocate for the pain pump, I have one and almost have my life back. no opiates anymore and I have a long list also of problems. from 4 neck fusions, 2 lower lumbar fusions front and back and torn acl and bone fragments in my knee. Everyone I have heard talk about actually having a stimulator says it itches like crazy and have them removed. I have morphine in my pump and it only takes 1/300 as much with the pump as it does orally. No feeling high or anything, in fact thats just it you don't feel any effects just no pain you can't handle. maybe a 2 or 3 on a bad day. I do still have to take it easy. If I try and do very much work I hurt but I will be like that from now on. I am putting off as long as possible a surgery on my neck for a 5th fusion because I have a torn disc with severe foraminal narrowing. so even with that the pump is doing a great job. Get a pump. get off of the opiates and if you are serious about getting your life back you will.

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