RSD Stage II, what do YOU do?

[Jenna37]

I have been diagnosed with RSD following hip surgery.

I have always had this thing--I hate being late for ANYTHING....

Apparently this applies to my body and the staging of RSD....After having it just about 3 months, and being diagnosed for 2, I am now in stage II.

I am sick of medication-it makes me feel so sluggish, and I'm sick of taking more and more of it.........

PT is covered, but the copays make it cost-prohibitive.....as in what it would cost to go the frequency I would start on my own program and comfortable with what exercises I would need to do properly so I don't hurt myself further, would take about half my income (I was already on SSDI when this all happened....)

So what do the other RSD'ers out there do?

Oh-it's affected pretty much my entire right leg, foot, and now is spreading into my fingers and forearm on my right side as well.

Ideas?  Other than meds?

[mellie4]

I struggle with RSD and can empathize.  And I'm tapering off meds because I felt it was too much.  I want to see how bad it is with no meds and go from there.  Not sure what medication you're on.  I know Neurontin is sometimes used.  I also have procedures done ... lidocaine infusions and stellate ganglion blocks.  At times I'll get some relief but never for long.  I don't even know what grade RSD I have; I'll have to ask.  Mine is in my hand and came from 9 hand surgeries after a failed implant in my thumb.  It has spread from where it started and now is in my wrist and up into my elbow.  Very rarely I'll feel it in the shoulder.  I don't have any real suggestions but lots of empathy for you.  It's painful and there are days I just feel like ... well, I'm sure most CP patients can relate you have good days and bad.  I have a huge internal battle with meds, pain, all of it.  I am seeing a pain psychologist but only have one visit done.  If that's an option for you, it may be helpful.

[Jenna37]

I have probably the best insurance you can with Medicare.

I pay an extra $112.50 (shoot, last year, it was $162.50-idk WHY it went down but I am not going to question something in my favor like that); and I DO have Medicaid to "pay" for what remains.  I put it in italics because how often they "pay" is 50/50.  I just usually end up swallowing the expense if it's under a couple hundred bucks, but with the health plan I have, it's one of the "Medicare Advantage Plans," and I purchased from Regence Blue Cross/Blue Shield of Washington, Oregon, Idaho & Utah.  It really has been like insurance "heaven" compared with the he** of calling repeatedly and either getting:

"Uh, no."
Click.
(insert hysterical laughter).
Cheerful, "Not right now, but should you get different/better insurance sometime, give us a call!!!!!"
"Yeah, sure....doctor can see you in seven/eight months."

Whoever said that good insurance doesn't make a difference is delusional.  With the Regence plan, it's basically the same as having any Blue Cross plan.  Now, the provider directory I have resembles what the Yellow Pages did fifteen years ago (when we HAD the Yellow Pages (not online).  I had United for a while: the provider directory-was a joke.  It was maybe 1/10 of an INCH thick--kinda like a pamphlet, and maybe 50% of the providers still accepted it, and the ones that did were wanting to schedule you out seven or eight months.  It's sad but true.

I still get EOB's from United over a year after cancelling the policy in favor of Regence Blue Cross.  In the thirteen months, I had ONE claim rejected, and it was after the surgery that lead to the RSD, and it was for the submucosal fentanyl, which Medicare does not allow w/o a diagnosis (actively) of cancer.  And the Regence Pharmacist/Pharmacy services dept felt so bad they put together a PM plan that I am still, to a degree, on: the patch version, and really, it was better to have relief around the clock; and then reverse what I was using & use it for BTP.

But in terms of meds, I do want to decrease my pain meds some.  I don't want to be sitting here in 10-15 years on a whopping dose of pain meds, in total agony, with nowhere to go.  I haven't had a dosage increase since my diagnosis, but I feel like it's too much, what with the combos of meds.  I find myself dozing frequently, and know mostly, it's the ME, but also that it is feeling like too much-at least right now.  I reduced-with my PM doc's permission-the LA pain meds, and TBH, I have found that I am still sleepy!  It will, he said, take a while to get out of my system...ugh, I wish it would hurry up!

Anyhow, thanks for the welcome!!!

Hugs,
Jenna

[Tuckamore]

Hi Again Jenna,

Namnam (Sherry) may not have any experience in RSD but she has a huge heart and good intentions.... and that's what matters here in the PM Community.

As you know from your other post where I just responded I don't have RSD either. I am not sure what your question is? I'll assume you mean what do we do when we don't have the funds for a specific treatment?

Like you I am on SSDI. Because I am far from retirement age my supplemental insurances is sky high, double of what I would pay if I were 65.... but given my multiple medical condition(s) I must have good insurance..... which takes about 40% of my SSDI. I know where you are coming from and believe me it hurts!

If I were single I may be eligible for additional medical help from our state. We have some great programs and insurances but I am blessed to have a soul-mate spouse. His SS income puts me past the limits of assistance. Not complaining, I'll take him any day! So if you have no other household income you may be eligible for some medical assistance.

If you are not eligible for additional assistance then I guess you do what I do, find the best alternative plan. You may be able to afford a one or two time PT appt. They could set you up with a home plan to assure you were doing the recommended program correctly. After a few weeks a follow up to evaluate your technique and make sure you are on the right track. It would be beneficial and hopefully not break your bank.  

We are all sick of requiring medication!! Unfortunately it goes hand in hand with treating chronic pain. I've adjusted.... it's become part of my daily routine. I think in time you will also. You're new to CP... it does get easier in most areas. It takes a good attitude and it sounds like you have one. Refuse to allow CP to defeat you or control your life. Continue to be the master of your destiny to the best of your ability.

Hope we have been helpful.

Peace,
~Tuck  

[namnam46]

Hi Jenna37,

I'm so sorry that you are facing this terribly painful disease.  You need to know that I don't have any experience or knowledge of RSD but I wanted you to know that I'm thinking of you and hoping and praying that you will be able to get the help that you can both afford and need.  I'm keeping my fingers crossed that someone that is experiencing this will come along and be of help to you.

Just wanted you to know we're here and you aren't alone..........Sherry  :)