Therein lies a lot of the problem...my PCP isn't listening.
Gabapentin: Prescribed dose - 400mg TID...gained 15 pounds in 2 weeks...no noticeable difference in pain, in fact, I had more flares while taking it. Previously prescribed (May-June 2014) dose - 600mg TID...gained 15 pounds in 3 weeks...no noticeable difference-doc discontinued. Discussed all of this with PCP...she agreed there has been significant weight gain and suggested I use a rowing machine. SERIOUSLY??? The med is NOT effective, my issue is with my knee & foot - how exactly am I supposed to use a rowing machine?
Wellbutrin: Prescribed for smoking cessation so what difference does it make if I no longer take it? (I am doing well with my smoking cessation on or off this med)
Fosamax: Combined with the GI issues from D2, and projected bone density being slim, why continue? I also need dental treatment that carries detrimental effects while on fosamax. I unfortunately didn't realize this before starting (have taken 5 doses) and doc recommendation is to NOT take the med until after dental treatment.
D2: Constant heartburn/nausea. I have chewed copious amounts of tums to counteract the D2 to no avail. Have talked with doc and am taking D3 instead per doc recommendation.

Therapy: Both of my therapists seem knowledgeable of RSD, however, my issue with therapy is the physical pain. I can EITHER do PT exercises OR function beyond trips to the bathroom/back to the couch. This is limiting my progress. Therapy stated their concern is that without PM, there is limited progress and without the progress, more visits will not get approved. They suggested holding off the remaining visits until I am seen by PM and have some measure of relief. Due to the 6 weeks we have been attempting to FIND PM that accepts my insurance, let alone the appointment wait time, it would seem likely that were I to postpone my remaining visits, I won't be in therapy until Christmas. Unless I pay out of pocket for PM or visit medical marijuana.

LL...I so appreciate your point of view with this! My apologies for simply venting and not clarifying my decisions in earlier posts.

Just got a call from the mental health facility in response to my online form submission.

1) It was a substance abuse counselor who called. When I explained the issue, she transferred me to the local mental health clinic
2) Local clinic informed me of the days/times: M-T-W, arrive at 1:30 for appointments beginning at 3:30 which are first come/first serve. WHAT???? I explained there was no way I could sit for 2 hours to wait on a 'maybe' appointment. Her suggestion: Come in, fill out the form and come back later.

Thanks, once again, for assistance.

You might check with doctors that accept Medicaid in a wealthy community with no lower cost homes. It was a strategy that worked well for someone I know. She also received excellent care at our local teaching hospital. By doing tons of research and asking lots of questions, she figured out how to best utilize the Medicaid Resources in our county.

There are often ways to work out strategies when you really put your mind to something. Is such a wait for the first appointment or for every appointment? Perhaps the clinic could offer you an area to wait where you could lie down if you explain why you can't manage in the waiting room. Or perhaps they might allow you use of a wheelchair so you could you elevate your legs.

If you are successful with your SSDI claim, it would also give you the benefit of Medicare 24 months after your Established Onset Date.

Not sure how this is going to register since I just got this app, but...
LL, the wait time for mental health clinic is the same no matter if it's first or subsequent visits.
As for location, all my provider searches have been for 50-75 mile radius...which includes some wealthy-very wealthy communities.


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So what happens when you call the providers listed in those cities?

Depends on what specialty. Neuro is limited to pediatrics/Alzheimer's/sleep disorders or they are not in fact accepting my insurance. (And I called 45 of those on the list.)
Pain management there aren't any
Mental health is only the 2 hour wait group



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You don't have to see a "pain management" doc to receive all the treatments and meds one would traditionally expect from them. In fact, as I wrote in a thread yesterday, I think there are disadvantages to seeing them. What do you want from a pm doc exactly? I've only seen a neurologist once and he wasn't terribly helpful.

Regarding mental health providers, you might find someone who will work on a sliding scale. If you went to at least one appointment at your local clinic and explained what your issues are with the wait, they might be able to refer you to other organizations or programs that would be suitable.

Since I am seeing a PCP who is not handling my pain at all, ortho opted for PM referral rather than attempt anything other than a single lido-cortisone injection in my knee (with the osteo diagnosis, not sure he wants to be doing that again) and endocrinology is only taking care of vit d & osteo, PM seems my only option unless neuro takes it on. But, I can't find a neuro.
I actually need to have an EMG & the possibility of neurosurgery is still out there.
What else is out there?
I am incredibly concerned that after a 30 minute drive & a minimum 2 hour wait, anyone I talk to at that mental health clinic will throw me under a 5150!!!
PM, neuro & now psych will all have to end up being self pay & I am running out of $ with no prospect of rehab & SSDI delays delays delays. Makes me feel as though barely making it to the bathroom & back a better option than continuing within the healthcare situation I'm in now.

I will see if there are any clinics I can get into while I wait on the call back from my care manager.


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If you aren't approved at the first stage for SSDI, than you need to prepare for likely a 2 year wait before you have an ALJ hearing. Very few people are approved at the Reconsideration level--if your state even still offers it.

You aren't happy with what has been prescribed to you, what meds have you researched and want to try? What procedures are you interested in?

You could see if your ortho will consider working with you directly. If not, you might consider second opinions from other orthos--or at the very least make some calls to see if they have experience with CRPS.

Reconsideration was filed about 5 weeks ago. I know it will be a while, so spending money I don't have for healthcare I have Medicaid for is not a direction I am looking to go until everything else is exhausted & this conversation, all of you here, is helping me find these options!

I'm not sure what meds/procedures I am hoping for/know I want to try. I only know what I have tried-what works/what hasn't.

When I talked to my ortho, he referred me to pain management.

What has not worked:
Gabapentin; meloxicam; tramadol (allergic); lidoderm patches have been touch & go; ibuprofen; TENS
What has worked:
Nothing I've tried so far except non-use of affected extremity; hydrocodone prescribed post-op seemed to help both knee pain & slightly reduce nerve pain; Wellbutrin (previously prescribed years ago) in an IR dose (200 mg BID); not having quite the GI effects on the D3 so far

What I think might help (in addition to being back on what worked):
Muscle relaxers; Lido/compounded cream(s);

I have not been able to try pool therapy & that is in part due to the distance. I'm hoping to try that when my pain is high to see if I can get relief, although a warm bath (with or without whirlpool jets doesn't seem to change anything)
Temperature contrast has been suggested but I'm not sure a) how to manage that b) what it's supposed to do

Anything not medication, I am willing to try but I don't know what other than the above to do and if any if it will reduce pain or increase range/function...I need both.
PT suggested moisture wicking socks so my shoes don't hurt (based on moisture causing the swelling) but the ones I've seen are thicker than what I'm wearing now.

Anything medication/medical procedure wise, I'm left what my current situation is. In willing to participate in clinical trials but all are so far from me & I can't afford the travel costs.

I remain open to all suggestions (including dealing with this horrible ACA crud).


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