CRPS/RSD

[Wanda M.]

Eileen, I pray that your test goes well tomorrow. I hate dealing with insurance companies!!!

[Jean H.]

Eileen
Hope all goes well our thoughts will be with you...Jean

[Jean H.]

Has anyone herd from Eileen, I have been thinking of her all day today and yesterday? ....Jean

[Eileen K.]

I had the bone scan on Tuesday, as planned. I had to wait for 2 1/2 hours after the injection, so we went to Olive Garden for lunch. I don't have any results yet. I'm going to call my doctor on Monday, because I don't have an app't till 2/5. I don't want to wait that long.
I'm sure next will be a hearing. That's what I'm really nervous about-the insurance company can just cut me off. I've been in touch with other people with RSD/CRPS and many of them have lost all their benefits. It's so unfair.
Talk soon,
eileenkny

[Joan J.]

Eileen,
The prayers are coming!
Joan

[Eileen K.]

Eileen
I was doing some checking on this, my brother had a nerve block to stop pain. I checked out 1 web site and they said this

How Is Complex Regional Pain Syndrome Treated?
Since there is no cure for CRPS, the goal of treatment is to relieve painful symptoms associated with the disorder. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and anti-seizure drugs.

Other treatments include:

Sympathetic nerve blocks: These blocks, which are done in a variety of ways, can provide significant pain relief for some people. One kind of block involves placing an anesthetic next to the spine to directly block the sympathetic nerves.
Surgical sympathectomy: This controversial technique destroys the nerves involved in CRPS. Some experts believe it has a favorable outcome, while others feel it makes CRPS worse. The technique should be considered only for people whose pain is dramatically but temporarily relieved by selective sympathetic blocks.
Intrathecal drug pumps: Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
Spinal cord stimulation: This technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.
Reviewed by the doctors at The Cleveland Clinic Pain Management Department.
I hope things go well for you...Jean

Jean,
Thank you for researching all this. RSD/CRPS seems to be a vague kind of condition.
My doctor and I discussed all of the therapies. The nerve block would have to be injected near my spinal cord and there's a slight chance of paralysis. No thanks.
I went to a specialist re: the spinal cord stimulator. That would have to be implanted near the spinal cord. My pain mgmt doctor and I decided this would be a last resort.

I was diagnosed with fibromyalgia by a rheumatologist about 2 years ago, but my pain mgmt doc says that I "don't present" as a person with fibro so she's not going to treat that. Also, it could possibly screw up the workers comp case. Go figure.

Right now I'm in a waiting mode. All the documentation is in to the WC Board and I'm waiting to hear from my att'y about a permanence hearing. My doc filled out all the forms to say that I'm permanently partially disabled. What that will mean for me, I don't know. She's sticking by that even though the bone scan came back negative as to bone loss, or osteoporosis.

They do know I have the quilting business, so I've never had to hide that from them. That's why I won't go the route of SSDI-I'd have to close my doors.

This got a lot longer than I planned. I just wanted to update y'all.
eileenkny

[Eileen K.]

I got a letter from the attorney the other day. He's requesting a hearing for permanency from the WC Board. There's finally a light at the end of this tunnel.
I'm going to a new rheumatologist on Thursday. Hopefully, she can help with the fibro; I spoke to her nurse and they want my files from the last doctor. When I asked if she knows a lot about fibro, the nurse told me nobody knows a lot about fibro. That makes me a little nervous.
eileenkny

[Eileen K.]

I'm late into this discussion but I learned some years back that the only thing that's normal is a setting on your washing machine! (and now I've got a new one that doesn't even have that, so I guess NOTHING is normal at my house! :roll: )

Joan, have you found a doc yet? I have a friend here w/ CFS who needs a new doc, we're not far from Northern Va. but her other doc was in Charlotte! Let me know if you find one.
Good luck to all of you, thru my friend I do know what strength it can take to get thru the day.
Hugs, Florence

[Eileen K.]

I know the frustration you go thru.. I have all three " demons" EBV, FBS,CFS, and RSD... yippie for me..

Yes days are hard, I push until I can't push any more, then I sleep for days until I can getup and push again..... it'sa visous cycle.
I have tried the antidepressants, the anti epileptic drugs, chronic pain meds, patchs, shots, and accupuntrure. I've done the nerve blocks , the creams, the therapies, vitamins, exercise. I have the braces, the splints, the TENS units. I currently amon my second implanted spinal stemulator. I've lost jobs, homes, and a husband thru out all of this..Life is hard...
Spinal implant #2 definately is a BIG improvement in my pain level... But I swear the one that that I believe helps me more than anything... is flaxseed oil..... I can tell the days I miss a dose

My health care "lost my prem payment" After 4 months of communications with them, they " found " the payment. However, by this time , I had missed 4 months worth of Dr. appt and treatments. The insurance company would gladly accept my con't prem payments. But now there was a rate hike that just happened to triple my quarterly payments... to over $3500 I lost my insurance due to my inabaility to make such outroughous prem.

I have been turned down for any SS disability twice,I've withstood the hearings and the courtrooms,,, to no avail. I no longer qualify for SS disability due too not haveing a recent work history...

I now have a stable homelife, with a loveing and understanding husband. I am blessed.....
My husband is Retired U. S. Navy, his Tricare insurance picked up my healthcare with out question. I am blessed.....

Know that you are not alone, There are many of fellow sufferers out here... we remain silent with in our own pain and carry own, but we are no less here......

Dee

[Eileen K.]

you are in my prayer, be strong, and try to enjoy life the most as you can dear!