NeuroTalk Support Groups - Sooo over this!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Sooo over this! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/219925-sooo.html)

So what started with a fractured kneecap...became nerve damage from the treatment...said nerve damage led to RSD/CRPS diagnosis. Still have knee pain (most likely arthritis) and limited ROM to my knee. I have the ice cold burning/twisting/cramping/crushing RSD/CRPS/nerve pain in my foot/ankle. On the average, not moving, do nothing minute, my pain level is about a constant 3-4 overall. >75% of the time, pain rises to a 6-8, then wanes back down multiple times/hour. If I am doing anything (ANYthing) it goes to a 7-9. When someone (PT/MD) asks what my pain level is, how do I respond?
Still don't understand how a PCP can diagnose someone with a chronic pain disorder and NOT immediately write a referral to PM. Finally found a PM group that takes my insurance and the stupid PCP office sends the referral for PT, not PM. Wow. Calling my case manager, AGAIN. Pointers for dealing with the stupid healthcare industry from THIS side of things is greatly appreciated!

Quote:

Originally Posted by Always_Believe (Post 1140767)

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

Another bout of ring-around-the-rosie with providers today. Supposedly my PCP sent a referral for pain management...however, the person who received the referral changed it to physical therapy. Oh, and, they don't even see patients for pain management where my insurance company said to go. 2+ hour drive to the ACTUAL pain management clinic.
Called the 'mental health' group on my insurance (aka 'specialize in substance abuse' place) figuring all this frustration combined with the pain and no life, I should talk to someone...called 3 numbers...no answer at any of them.
Contacted a local pain management group to find out what their rates are so I can figure out which kidney to sell. I can't go on like this much longer.

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:

Quote:

Originally Posted by Littlepaw (Post 1140905)

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!

Quote:

Originally Posted by Littlepaw (Post 1140905)

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.

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?

Quote:

Originally Posted by Littlepaw (Post 1140905)

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 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:

Quote:

Originally Posted by Always_Believe (Post 1140914)

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

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.

Quote:

Originally Posted by LIT LOVE (Post 1140964)

As for the medications: I have had a lot of communication with my PCP/group and every one of my concerns have been completely blown off. The medications I have been prescribed only serve to continue my downward spiral. I realize I will be labeled "non compliant"...it isn't the first time and the first time saved my leg. I unfortunately know too much and am more than willing to take that label to save my function/limb/life. It's unfortunate my healthcare providers aren't. (I am taking a different form of vitamin d-approved by my endocrinologist, but I cannot justify ingesting any chemical that makes no difference & causes side effects - including an ineffective dose of an effective medication...unless someone can refute that....). I cannot put my physical/emotional health behind a SS claim. If that causes my claim to be denied but my life/limb/function to be spared, that is the trade-off. What is the difference of selling my house & living with my parents or my children now or later?

I am considering stopping PT with 4 visits left. Yeah, that's really stupid and came from my frustration. It was recommended by my therapist also. I am not meeting the goals so when it comes to renew, the insurance won't authorize additional sessions.

So much centers around PM. I'm okay pushing through pain for the most part and can/have/will continue to push through as much as I can. But...everyone has a limit. I can tolerate a pain level 4 indefinitely. But when that kicks to a 7-9 with any activity, there's only so much I can handle. After almost 2 years, save the 5 months post-op, I don't know how to hang on anymore. Meditation/relaxation exercises only go so far. Elevating prohibits function. What's left? My hope reserve is all but empty, especially when I am meeting brick walls on every aspect. I am grateful to have a place to put my frustrations out there and receive feedback from all different angles. You all are all I have to that end and I am thankful for the honesty.

***Please note: I am continuing to work with my case manager to change my PCP in light of my ongoing concerns. My hope may be extremely limited, but I will not simply do what I'm told when I know it's wrong/not working

Quote:

Originally Posted by Always_Believe (Post 1141007)

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.