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foreversore posted:
Hi, everyone! I haven't been on for a week or so. I see a lot of names that are new to me...sorry that you had to come here but glad that you can benefit from all of the wonderful information you can get here.

I haven't checked in for a while mainly because I have been in a funk. It appears my cervical epidural has also failed to improve my pain. The good news is at least that area isn't worse. I am still suffering from the additional pain and burning from the lumbar epidural. I thought that since it was "nerve pain" that my Savella would help it, but sadly it doesn't. I am waiting to hear from the pain management clinic on Monday. I am pretty sure they may want to repeat the cervical epidural or they may try to refer me back to the surgeon even though the surgeon already said he couldn't help me. I feel like a hot potato that no one wants to touch. Between the FM and the spinal arthritis I have seen 6 doctors and 3 physical therapists. I am a realist and know I will NEVER be completely pain free but it has to get better than this. I can deal with a 4 all of the time its later in the day when I am between a 7-10 that I have a hard time with. And as you can see from the time of my post...it keeps me awake nights.

My pain management doctor seems like a decent guy, I think he is trying to exhaust every other avenue before he goes to the opiates. I have already failed Tramadol and Norco and I know this concerns him. I am more than willing to try whatever he wants to try so long as I know there is a light at the end of the tunnel.

My DH is off for the next 2 days so he is going to help me straighten the house and get it decorated so we can get into the holiday spirit. This is usually one of my favorite times of year so I am hoping the decorations and such will help pull me out of the funk I have been in. He is also going to go through my holiday treat recipes and decide what all treats he would like to have this year. I really enjoy baking and this should help too.

I hope you all have a wonderful and pain free day and may you accomplish all you set out to do. For those having a flare or additional health issues I send you well wishes for speedy healing/recovery. I am going to make more of an effort to check in more even if it is just to say "Hi, I'm here".
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humblepi responded:
Hi foreversore, Thanks for the warm wishes and greetings. I too have FM and arthritis of the spine.. I too am in a funk. I am going to try Ultram as Vicoprofen (Vicodin and Ibuprofen)does not give relief for the pain as it once did, and also not lasting as long . Hopefully Ultram will help. I have used it before, and the right dose did help for more hours and gave more relief as well, so we'll see.
I hope you find some relief from your pain Monday, if not sooner. I know that hot potato feeling WELL. I went for years without receiving the help I needed for that same reason you peak of. Just pace yourself as Mimi (Dollbug) says. Don't overdo it. Let us know how it goes Monday. Take care and best wishes.
Mary
 
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foreversore replied to humblepi's response:
Thank you, Mary. After 20 years of having FM I wish I had found the happy medium when it comes to pacing myself. I spent so many years pushing myself beyond the limits of my capabilities due to ridicule from family and friends that it is difficult to slow down and take it easy. I am going on 72 hours with only 2 hours of restless sleep to my credit thanks to the lovely burning in my lower back and rear caused by the lumbar epidural. I really didn't do a whole lot today. I mostly supervised LOL. I keep holding on to the hope that sooner or later they are going to do SOMETHING to help me feel better. Sometimes I despair but I try to pull out of that before it sets in really good. I hope they call early tomorrow and I hope they can squeeze me in and see what all we can do. I will keep you all updated. We all know what a trial and error process this is and I just haven't found the right combo yet but we will get there i am sure of it!
 
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booch007 responded:
I am so sorry you are suffering so.

In Minnesota at the Mayo clinic i think is a trick with an implanted stimulator to help with the pain. Maybe do some research on this.

Pat , an old member here had it done and is in great shape now. I have a TENS machine that I use as a tool when i need it. It is like that but implanted......maybe you can research someone in the area that offers this therapy. Probably a large medical center.

Don't give up...there is always something around the corner for you waiting. You just need to keep walking to the corner to see it or find it!

All my best..............Nancy B
 
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foreversore replied to booch007's response:
Thank you Nancy, I have a friend on Facebook that has one of those implanted units and most days it works well for her. She doesn't have FM but I wonder if that will make a difference? She still has a few bad days but her good days outnumber them now. I am willing to try anything they want to try just in case it is the one thing that helps me.
 
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ctbeth replied to foreversore's response:
Hi from Connecticut,

I do not have FM, but I do have an implanted spinal cord stimulator. I have spinal cord injury and residual pain from multi-trauma (car accident) and cervical and lumbar fusions.

My best friend has FM, so we both read the pain management AND the Fibro communities together.

If you peruse the Web MD Pain Management Community, there are a few of us who have implanted spinal cord stimulators (aka neuro-modulation unit).

If there isn't an open discussion now, just begin a new discussion and you'll get replies.

For me, it is a miracle. I do not know anyone with FM who has one, but I have read that they are now used fro FM.

Initially, a trial is performed. Small wires are attached to a battery outside that you'll have to carry with you for about a week. During this time, you'll have the opportunity to change settings and get a general idea if the technology is right for you.

If you like the sensations and they help with your pain, you can have the permanent unit implanted.

This involves a battery the size of a small powder compact (mine is in the right hip/ butt cheek). The incision is about 2 inches.

You can feel it from the outside, but, once healed, you'll not be aware if its presence. You can palpate it from the outside, but not see it.

The paddle (electrodes) are implanted in the proper (for you) place mid-line on the back. Mine is at T-6. This involved an incision approx 2 inches.

For me, the surgery was not terribly uncomfortable, far as surgery goes.

I'll post a link at the end of my comment.

The most-important thing, during the first few months, is PATIENCE. I've seen many give up too soon.

It takes a few months for all of the post-op inflammation to subside. The sensations change a little while healing. During this time, you'll have the opportunity to work with the company representative to "fine tune" your settings during this time.

There are a few companies that make the neuro-modulation units. Mine is St Judes medical, which s the site for which I'll post links.

I have spoken with many persons regarding SCS and feel fine posting my email should anyone wish further information from me, or if I can answer your specific questions/ concerns.

For me, it has brought my baseline pain from an 8-9 to a 4-6, which is 40% at its worst to least.

The trial can be performed at most pain management MDs office; the permanent implantation surgery is usually done on an out-patient basis. Mine was done at a community hospital, not a major medical center.

For further information:

http://www.poweroveryourpain.com/discovering/how
 
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foreversore replied to ctbeth's response:
Thank you so much for all of the information! They are thinking of cervical and lumbar fusions for me but are trying all they can do before they do this. I also have mild scoliosis in my lumbar spine so with the fusion I may need a rod and screws (I hope not!)

I will ask the pain management nurse about this device tomorrow and have her ask the doc if this is a possibility for me. I would like to not have the fusions done, but I will if I need to. I would have to pull out my MRI to tell you exactly which discs are the worst...most of mine are herniated but some only mildly. I have one cervical disc that impinges on the spinal cord, 2 thoracic that impinge on the thecal sac and 2 lumbar that press on the nerve roots to the nerves that go into my legs. The lumbar epidural I had was an epic failure causing more pain and the first cervical did nothing at all.

I will check out all of the info you left for me including the chronic pain community as well. I will always <3 the folks here but I am always ready to meet new people who understand where I am coming from


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