Sooo over this!
 

:hug: Sorry sorry and more sorry.....:grouphug:

And stress is effecting your CRPS and they are like oopsy....:hug:

Ugh! The crap everyone is having to go through to get help! :mad: You must be ready to scream, that or you have already, which is perfectly understandable. It's terrible what it's taking for you to get into PM. You're right a referral should have been forthcoming. Nerve pain is hard enough to deal with already without this kind of stress thrown on top.

I know you are sick to death of calling your case manager but....what do they say about the actual clinic being over two hours away? Can they authorize anything closer? Are there any days at all the doctor visits the satellite? I don't see how with your current mobility they can expect you to get there routinely. Travel is worth it to see someone really great who offers something you can't get at home but otherwise bleh! If it is possible to push a phone call through to your case manager's supervisor do it. I have had luck doing this in the past. The supervisor may have some override authority and may be more knowledgable.

On getting support, who knows about the substance abuse program. If they don't offer mental health counseling they won't be able to treat you. Your best bet may be a local community agency or possibly some sort of teletherapy. Some of the big companies like Cenpatico (they have services in Illinois) offer that service for areas that are underserved and without providers.

So sorry you are going through this. :(
I am sending extra healing love, Littlepaw :hug::hug::hug:

I know I'm not alone because so many of us are going through the same thing right now. There HAS to be someone we can protest to!

My problems all seem to snowball and no one knows (or can answer or is honest enough) where the first snowflake fell. According to the case manager, the clinic information she gave me is a listed provider for PM and is only a little over an hour from me. However, RIC is a large company with many offices, the PM office is in the city...over 2 hours away. She was not given that information &/or didn't ask. I actually had my PCP nurse tell me "you should call them to make sure they take your insurance". Really? Isn't that in your job description? Especially when your patient is crying out for help? I also called my case manager again today after all of this mess. Left a message.

Unfortunately, no one takes medicaid so apparently, I am screwed five ways to Sunday. I personally called over 20 providers listed on my insurance website. No dice. I called one group to find out what they charge...$250 for initial visit and $175 for follow up visits. Anyone wanna buy a kidney?

I called 3 of the phone numbers for the mental health provider they gave me...no answer at any of the numbers. I submitted an online form as well, so we will see where that goes.

I'm also looking into bypassing the whole western medicine entirely. I've already taken myself off the gababentin, fosamax, wellbutrin and D2. Debating halting PT as well...no progress = no more approved visits. A visit to the medical marijuana clinic is $80-$200 depending on location.

What pushes me over the edge is that I am trying my damnedest to get back to work (especially since my SSDI is in appeal) so that I don't have to move again within a year. This house is all I have. It's paid for, but without income the utilities, property taxes, homeowners insurance doesn't get paid...let alone groceries. And I can't rehab without proper treatment. Not sure why that is so hard for my providers/insurance to understand. I worked in healthcare my entire life...this ACA crap has destroyed healthcare in the US

Always,
Wow, I'm so sorry your going through this!! We live in such a wonderful country that just can't quite seem to care for our own. Know that you are not alone and we are all here holding your hand!!
:grouphug:

Unilaterally deciding to stop taking prescribed meds will be viewed one of two ways by SS: 1) you're not being compliant. 2) your condition has improved so you no longer needs meds. You're considering "bypassing the whole western medicine entirely"? You're considering medical marijuana? You're considering stopping pt? SS will continue to scrutinize your medical records during an active application.

While I understand wanting to conserve money in your home, being cash poor and trying to utilize Medicaid takes away many timely options. Many of us will, and have, sacrificed our financial security for years while trying to attain remission. It's unfortunate, but it's also reality.

If you're having side effects or a bad reaction to a medication, than by all means, make an appointment and discuss it with your doctor. But stopping all your meds at the same time makes it difficult to even determine where the problems lie. Are dosages too low? Too high? Are there interaction issues?

Same thing with the pt. Is it the wrong therapist? Or the wrong type of therapy?

Regardless of SS, there is little point in you going to a doctor you don't trust or communicate with. There is nothing wrong

If you are unsuccessful with your SSDI application and your Date Last Insures expires, you can always apply for SSI benefits later on, so long as you meet the savings and resource test.

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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If you can't get in with a PM have you tried physical medicine and rehabilitation? My doctor is wonderful and he is in the physical medicine and rehab with an additional certification in pain medicine. I know he is not the only one in his department that is dual certified. I also found that this department is much larger than PM. Just a suggestion. Good luck!

Thanks Kris! I actually tried to find my sons physiatrist for recommendations in IL...haven't figured out if he's still there yet & I'm sure he would do whatever he could...we developed a special relationship over my sons last 7 years.
Not sure there is any listed with my insurance, but I will check for sure!!


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I would suggest Low Dose Naltrexone. Your ortho should have no problem prescribing it, and it has little to no side effects at the correct dosage.

I have thought of that as well...again. I am having trouble getting my pain across to any of my doctors, although I am inclined to think if my ortho refers to my diagnosis as 'this RSD you speak of' & referred me to PM without hesitation or attempts to handle it himself, it won't get through to him either.
This is why I am so near the edge. No one is on my provider lists except those who will not listen or help.


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I picked up some epsom salt lotion a little while ago with every intention of trying it at that precarious moment right before a full on flare. Since I am just really learning the difference between my normal pain & a flare, I really didn't know when that was...until recently. So tonight, I tried it. So far it seems to help reduce a flare.

Any suggestions on timing/proper application?

Also curious about the whole desensitization stuff I've been reading about.

So, more research and I will NOT be doing the contrast bath thing.

In fact, I am printing out the page from RSD Hope explaining it for my therapists.

Now....on to the whole "it's your foot sweating that is causing the swelling/shoes becoming too tight" thing...

Sounds like where I live! This is terrible! :(