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Pain is so intense 24/7....

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Posted 5/6/2013 2:46 AM (GMT 0)
Hi all, I am still a newbie and I want to run something by you in hopes that someone can help me understand the pain I am going through.

I have been on disability since 2011 when my FMS got out of control and still is, I take Cymbalta for it. I still can't sleep on my sides, which was my favorite position of sleep. I have lots of sleepless nights due to pain. My problem is that I have so much pain at different parts of my body that I don't know which one of my diagnosis' is effecting the others or not. My FMS pain is one thing and my OA is an other kind of pain.

What is also disturbing me is the fact that I have no quality of life due to the fact that I do not understand this pain; I have pain in the buttock to hip, down me right leg and to my ankle. It is so intense, there is throbbing pain, numbness and tingling from buttock to my big toe. I've had an MRI and my lumbar L5 herniated disc changed a bit since 2007 but I guess not enough for the Neurosurgeon to be concern since I am only going to see him on April 2014.

I can't stand or sit for more then 5 minutes, I can't walk 20 feet without a roller walker for support. Since I can only sleep on my back (I just can't get use to it) I always have a pillow under my knees. Most of the time I have to remove the blanket off my right leg to my ankle, its painful. I can tolerate to pain when I am sitting with my leg up.

So my question is if my herniated disc is not that bad and Sciatica is a pain that comes and goes, why am I in so much pain 24/7? Is there someone out there that is going through the same thing as I?

Meds:

Metformin 1000mg

Nexium 40mg

Synthroid .50mg

Cymbalta 30mg

Kadian SR (Morphine) 50mg (used to take 200mg plus the 10mg of FR, it was not doing anything for the pain and I was scared of getting addicted, so was weaned off to 50mg up to now)

Kariden

 

Posted 5/6/2013 3:08 AM (GMT 0)
I have Fibro and OA in my back. When my OA was in a really bad flare I'd get terrible siatica down my legs. I had to use crutches at one time to support myself (barely). I keep a cane in my closet for emergencies.

I went to a back specialist who got me with a wonderful Physical therapist. Together they worked out a special workout for me the strengthen my core muscles. She also did trigger point massages for me on really nasty days. It took 3 months of 3 times a week to get me moving normal again.

I still have flare ups because my L5-S1 joint is bone on bone, but atleast I can walk without aids right now. See if there is a back specialist in your area to help you.

Have you tried body pillows to support you on the sides? Ice packs will help the spasms and alternate with heating pads.

The pain of the bedsheet touching you is something that hits me regularly. I just dress in warm bedclothes and heavy socks and sleep with no sheet.
Posted 5/6/2013 2:42 PM (GMT 0)
Thanks for the advise. Like I said before I have not seen the back specialist, my first appointment is only on April 2014, waiting game.
I use a Tens machine, I put cold (with my arthritis in the lower back, I can't put cold too often cause it hurts more) and hot packs (alternate), I use a body massage pad and do my stretches twice a day, those stretches are the ones the therapist gave me to do at home. There was no points going to physiotherapy for the Tens and stretches when she said I can do this at home. I have been doing this for 8 months now with no change.
I hate it when I sound like a broken record, Its not me.
In a couple of months, I will have to apply for my CPP Disability. I never thought it would come to this.
Posted 5/6/2013 3:10 PM (GMT 0)
Hi, Kariden, and welcome!  Well, you sound a lot like me a year ago.  I had intense pain, needed two canes to walk, had tears running down my cheeks just trying to lift my feet off the floor to take a step and trying to get my legs in bed was excrutiating.  I was so limited in what I could do.

 

I finally saw a good board certified rheumatologist and was run through a myriad of tests and it was discovered I have ankylosing spondylitis.  It's a form of rheumatoid arthritis of the spine.  I also had sacroiliitis, too.  I was put on ibuprofen with food and a muscle relaxer and now am walking fine.  I went to the casino for the first time in a year, yesterday and walked all over the place.  This casino is over five football fields in size!  Now I couldn't have done that before my diagnosis and treatment.

 

By the way, I have no herniated disks or degenerative disk disease either.  It was the AS that was causing all the pain!

 

So, maybe this is something that is going on with you.  Here is a link all about ankylosing spondylitis.  See if this sounds like you.  It was mainly through blood work that I got the diagnosis.  There is a genetic marker for spondyloarthropathy called the HLA-B27.  Also the blood work to test for inflammation in the body all came back high, too.  Fibro isn't an inflammatory illness so that was ruled out as the cause of my problems.

 

http://www.medicinenet.com/ankylosing_spondylitis/article.htm

 

I will be praying that you get to the bottom of this.  I've been there and done that and it isn't fun at all.  All I could do is sit and would break out in a cold sweat when I needed to use the bathroom because it meant I had to walk.  Even getting off the toilet was a trick!  But, hopefully you will find what is causing this and get it taken care of.  

 

Sherrine 

Posted 5/8/2013 1:27 AM (GMT 0)
Thanks Sherrine, I saw my doctor today and he is checking me for HLA-B27 and will be going to the Pain Clinic. Also my Rheumatologist is retiring so he is transferring my to another one. I feel its good that I am being transferred because my immediate Rheumatologist is definitely old and old fashion ah well he did his best that old fart.
Sometimes you need a fresh mind who is motivated to help you. I am not going to start having hope again to go back to work. I've been disappointed so many times in the last 2 1/2 years that its time for me to move on. If by miracle I can return to work, so be it and if not well nothing lost.
Here in New Brunswick the waiting list to see any specialist even the Pain Clinics are one year long.
But I don't get discourage or depress, I thank god everyday for there are others in worst condition then me. So who am I to complain.
Posted 5/9/2013 7:54 AM (GMT 0)
Welcome and your in the right place! We do understand about chronic pain. Many of us have been down with severe pain. I am glad your getting lined up with some specialist. Maybe they can figure out why your pain is constant. I use to be in bad shape until I found this forum. It has really given me hope to get back up and fight this chronic pain. It has been a few years now and I am doing fairly well. So try not to get discourage. I just take a day at a time.

Let us know how your doing. Feel free to ask questions. I hope to see you around.
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