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jenn04 posted:
I was diagnosed with FM in 2001. I live with debilitating pain, fatigue, and memory loss. I am considering getting a spinal cord stimulator. Has anyone heard of this? Has anyone had success with it?

The majority of my pain is in my back, neck, and shoulders. But I do hurt many other places as well.

Currently I am not on narcotics, and I can barely function. It was my choice to wean of the medication with my doctor's care. The spinal cord stimulator would eliminate or greatly reduce my chance of having to take narcotics. But I have heard a lot of scary information on another site.

I am taking Cymbalta and Lyrica right now.

I was also wondering if anyone received Lidocaine infusions. I did, and it seemed to help. But I have to do it once a month and I cannot get transportation home from the doctor. You are under sedation, and cannot take a cab. I tried everything! Any ideas??

I tried charities, church, friends, the insurance company, hiring a home health aide on my own...

Looking forward to meeting everyone and getting information and support.
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dollbug responded:
Hello Jenn and welcome...MiMi in NC. I am sorry that you are dealing with so much right now. I am sure that others will chime in here. It has been a bit slower this week and I am hoping that other members are just busy with getting ready for the holidays and that things will soon pick up. This is a good group of people here who normally post almost every day.

I do hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. You will find some really good info and possibly some tools which you have not thought of trying.

FM is indeed a hard illness to face each and every day and there are a lot of us who have other health issues as well, along with FM.

I am one of the FMers here who has learned how to *control my FM pain by taking vitamins and supplements and doing other things as well*. I am NOT painfree but I am so much better on some days than I was when I first got sick. I tried different kinds of medicines in the beginning and did not find any which really helped me without causing other side effects. So I eventually did my own research and a trial and error process of the tools that I wanted to try and found what worked for me.

I will say though that I have not found anything which has helped the chronic fatigue that I have. I continue though to keep looking for something which just might help it as well.

I would encourage you to be sure and ask your doctor to check your Vitamin D level, if you have not already done this. This is just a simple blood test BUT you must ASK the doctor to do it as it is not included in the normal blood work that the doctors do and there are some doctors who are unaware that low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well.

I take the following: a good multi vitamin, Omegas, Vitamin D supplement, Fibro Response and Magnesium Malate (which you have to get these 2 at vitamin store) and I also have to take P5P which helps my lower back pain. (this also found at vitamin store) I also take a joint supplement since I have knee problems. These are the ones which I think help my FM pain the most.

You should also know that what helps one person may or may not help you. Since we are all different you have to figure out the right combination of tools which work for you.

I also use a heating pad as needed....(my best friend)...take hot shower right before I do to sleep, using lavender bath salts which help my body to relax so that I can sleep better. Sleep is really important to all of us FMers. Lack of sleep itself can cause additional pain. Drinking plenty of water each and every day is also important. Watching what I eat and doing gentle exercises and stretches is also very important. Moving regardless of how you feel is also a must. The more we move the better we are since we keep our muscles from getting stiff. Keeping myself on a schedule of sorts is also important.

Keeping a journal during your *trial and error process* might help you find what really helps you cope better....especially in the beginning.

I have not used the spinal cord stimulator. I think there are a couple of people here though who have tried them. I hope they will share their experiences with you.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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ajnsmom responded:
Hi Jenn, Welcome!

I haven't tried the methods you speak of, but my meds are helpful most of the time in reducing pain. I take Amitriptyline, Gabapentin, and Flexeril. They all make me very sleepy. I can no longer work, so I filed for SSDI and am waiting on a decision. I also have other health problems. Others here will chime in with various things they have tried. I pray the rest of your day is a good one.

Linda S. (Jax, FL)
 
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bette_kaffitz responded:
Jenn,

I get the lidocaine (nerve blocks) every 3 hours in my low back. They seem to have a 90 day warrantee. And watch out on day 91.

I did very well with the trial of the electronic nerve stimulator, but the implanted one was too low. It did not cover the pain at waist level where mine is worst. After a year and a half, I had mine removed. If the placement had been correct, I would have been very happy.

Is there some way you could trade services with someone else for your medical rides? I used to trade babysitting with a girlfriend on grocery days. I shopped Thurs. She shopped Fri. and our kids got to play together. Maybe you could watch a friend's little ones in exchange for your rides. If you are a good cook, maybe you could fix someone's dinner (her groceries) in exchange for a ride. It's the old barter method. It worked during the depression. It ought to work now.

Only those of us who have been there know what you are going through. It is a trial. I am so sorry that you are dealing with these money issues along with the fibro. It's a double whammy.

Towards better days,

Bette
 
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booch007 replied to bette_kaffitz's response:
Good morning,

I am unclear on how this works. They sedate you to give you IV Lidocaine??

I receive Trigger point injections (30-60) of them throughout the neck, shoulders and back. The Lido is actually to help me with the soreness of the shots....you can get them as DRY NEEDLE and they work as well.

I had my DH drive me in the beginning as I got maybe 200mg into my system at times and it does make you loopy. I didn't want to drive. (they didn't mandate this) Then I sat and hung out in the building before i drove.

I don't understand why a CAB can't be used to return you to home. It covers the mandate of post sedation (at least here in NY?). Seems like they are making it tough on you.

Maybe the cab driver can walk you to the door? For safety?

We also have medical transport for people needing therapy here in NY. Call the office of the aging and see about a bus system that picks you UP at the door and drops you again. THIS IS ALL THEY DO. All people with medical problems and they assist you.

It is callert PART in my county (Putnam Area Rapid Transport) it is subsidized by the county and very inexpensive for the patient. If SSDI they cover the cost. In Westchester county it is called something different. But same action and cost...the key is making the appointment for pick up and return so they can make a route.....and it helps all the patients so much.

I really think the office of the aging and county access to services needs to be more available to newbies who don't know what is available to them.

TRY THIS.....and find out why the CAB was no good for the doctor. Lidocaine has a short (half life) lasting time. So it metabolizes out quickly as apposed to other meds. So other than the liabilty to their office you should be better and feel better when leaving......

Good luck with this, hope this helped. Nancy B
 
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bette_kaffitz replied to bette_kaffitz's response:
OOPS!

The nerve blocks are every 3 MONTHS. Every 3 hours would be a bit much--even for ditzy old me!.

Our county Office for the Aging has volunteer drivers who could possibly take you to and from treatments. Our people get rides to Buffalo or Rochester (100 miles each way) or just to our rural hospital.

Bette
 
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bette_kaffitz replied to booch007's response:
Nancy,

You must be kidding about the dry needle trigger points. We had a 2 year period after one pain doctor left and before the new one came. I drove that 100 miles to Buffalo every 2 weeks for the shots at a clinic where they did not use lidocaine. I traveled with a cooler full of those gel cold packs and drove home with them 20 minutes on, 20 minutes off. There was a LOT of pain--even with the cold packs.

I would not do that again. I'd rather go without the TP's than have to endure them without Lidocaine.

Bette
 
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fibroinsd responded:
How long have you been on the Cymbalta and Lyrica? I was on Cymbalta for about a year..and it was great..then it was like it was too much and I was too sleepy...How is it working for you?

cece
Let's put the fun back in dysfunctional !- Mary Englebright


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