Finally getting a diagnosis has helped a lot.

Getting a lawyer for my SSDI case, is also helpful. But...

How am I supposed to rehab my darn knee that started all of this if I'm in pain and swollen for 2-3 days after a simple PT eval???

I am struggling (ok, battling insurance) to find a neurologist who will take medicaid and actually knows something about RSD.

I am not seeing anything in the road ahead besides the bumps that cause increased pain.

I am trying so hard to get back to normal. Back to work. Back to life. I am almost to my 'quit date' with smoking. I only have my final clinical exam left before being able to take state boards. I only need one form from my last employer to reinstate my IL LPN license. I only need a copy of my title to get my car plated in IL. I'm tired. I'm hurting, physically & emotionally. I can't go and see my new grandson. I'm going to have a hard time moving at my daughter's wedding.

I need hope. I need someone to enlighten me on how to move forward. How to get help with the pain. I'm used to being on the other side of this. I need help learning how to ask for help.

Remember Hadrian - Brick by brick good citizens of Rome...

It is easy to get run down by the tenacity of this damn disease. I think it is especially hard when the logical, goal oriented part of our minds tries to comprehend why we aren't getting anywhere fast. The things you are dealing with, pending exam, SSDI, licensure; all those would be stressor annoyances to anyone who was not in pain. Pain makes you tired, wears you out emotionally and physically, steals your resistance. Some days just doing your ADLs takes fortitude. To work around this you must approach the large goals in smaller components that are achievable and give yourself praise for meeting the smaller goals. This is the new normal, you still deserve praise for doing less than you used to!

The smoking cessation date will arrive. Getting the form from the employer sounds doable. Every smaller goal you meet will make you feel stronger and more accomplished. The large goals will diminish in chunks, not all at once. Do as much as you can and forgive yourself for the rest.

Are you able to get to a pool? I don't remember... I can't say enough about Aqua therapy when everything else is causing pain. Can you tolerate any sort of compression or ACE wrap? Have you tried kiniseotape? I find it helps with swelling and microcirculation (my skin looks normal color underneath as I take it off then goes mottled). I wear it for a few days then stay off a few. I am sorry for the bumps in the road. They are tiring and frustrating, I am sick of them myself but don't see any other option other than to get as much life back as I can and try not to be devestated by what is missing. For another inspirational quote I'll go with Churchhill "If you're going through Hell, keep going!" Hang in there sister, cuz you can't give up till I do and vice-versa. And Skype with the grandbaby when you can if you aren't already, not as good as smelling their little heads but at least you get a visual.

Sending extra Healing Love,
Littlepaw

LP

No access to a pool. I have a (smaller) whirlpool tub in my bathroom, but it's incredibly difficult to get in & out of and I can't get the jets to the right places/right intensity (even if that means "off").

Most days I can make it to the commode, I put the same clothes on that I dropped on the floor in the potty palace the night before while sitting on the commode. I can make it to the sink to wash my hands/brush my teeth and back to my bed to take my meds...and/or walk downstairs to let the dogs out and back upstairs to complete the above tasks. At that point, I'm spent for a while. Sometimes it's only an hour, sometimes it's several hours, sometimes it's the rest of the day.

I can stand. For about 10-15 minutes before the intense tingling/stabbing in my foot starts. I can walk without the tingling/stabbing for about 50-75 feet before the shooting pain in my knee starts. I feel like if I could rehab my knee more, I could rehab the peroneal palsy a bit. But that (knee pain) is not really being addressed. The PT that did my eval suggested (several times) that I contact my ortho about pain management. That is incredibly difficult for me. I tolerate pain pretty well and can be laughing with a pain level 6-7, but it gets to an 8-10, I'm quiet or crying. My experience with my endo pain years ago (before the major "drug-seeker" movement) was a rough one. Probably what makes me not want to ask for pain meds. I don't want that label. Funny that I didn't become addicted when I was on 20mg oxycontin twice/daily with 10mg oxycodone for breakthrough every 4 hours for 8 months.

I think I'm just tired of the tendency of those around me to disregard my pain as though I'm not really in pain at all. That perception contributes to me not discussing pain management with my ortho. Please tell me I'm not alone thinking/feeling this. When in the process did you think/feel this way? How did you deal with it? How did you begin your conversations with your MD to address your pain? What about family/friends?

I don't know that people who do not have pain can really, truly understand what it's like. I think I don't get tired of them not understanding because I simply don't expect them to. Having worked in healthcare for years and years in hospital settings I can honestly say I had no concept what pain was really like. It didn't matter what my training was, how empathetic I was, how many patients I was around on a daily basis. It didn't matter that I'd had root canals, kidney stones and given birth. Until this nerve injury and CRPS business I STILL didn't get it!

The only people I expect really understand are fellow sufferers. My mother has MS so is sympathetic, my best friend has a badly herniated disc and was laid up for months. I find I excuse everyone else, seeing as for a long time I too was like everyone else and had no idea what this was like. That's why coming here is helpful, people understand. It is really important to have the conversation with your ortho about getting more comfortable until you have a PM doc. It is not a failure to admit this crap hurts. You have identified nerve damage, that's a legitimate as it gets. The pain is not helping you get better, it is slowing down recovery. Don't be stubborn about asking for help with it. I was just frank with my doctor about needing to try something else. Broach it as a short term solution until you have the right specialist. Explain that you need to rehab, they are used to people hitting a wall sometimes. Start with something low end like tramadol if you don't want to ask for the heavies. Don't give up on the pool. A whirlpool is not the same, it's the non-painful gait and standing that you need. Community /senior center? Private club? Y? hospital? What does PT say about where you can go? Sometimes assisted living facilities or retirement communities have them and will let you come in for a nominal fee. Let people know what you're dealing with, ask for help, they may make an exception on access.

Don't give up, the PT eval was a setback but gave the therapist starting point. That means you are moving forward no matter slowly.

Littlepaw

This was the comment I was referring to when I brought up addiction vs. dependence.

I know LL, but most providers that I have seen in the past 5 years (on both sides of the issue) do not recognize the difference. When a patient asks for pain medication, quite simply, they most often get thrown into the 'addict' side of things and get labeled a 'drug seeker'. Pain is so subjective. There are things most in the medical field confirm cause pain: broken bones, cancer, surgery, childbirth. But even then, if it's an infant "they don't feel pain". If it's soft tissue, it heals too quick to need any prescription. I was lucky with my endo pain. I had doctors who understood. Then again, I also had surgery after surgery after procedure after surgery.
When I fractured my patella, the ortho didn't give me anything. I didn't ask. My second ortho was informed on my initial visit that I would not endure PT without pain management. He obliged. I've been without MD's/PT's/pain medication since September. I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain. And I feel like I can't ask any of my current doctors to do anything about it because the one I did (my PCP) informed me she doesn't prescribe narcotics - ok, great, no problem, how about some lidoderm patches? How about a PM referral? Her response is to try to keep increasing the gaba. Slowly. And maybe, someday, when the wind is blowing the right way she will refer me to PM. Until then, I'm in pain.

And I refer you to the McGill Pain Scale:

http://www.rsdhope.org/mcgill-pain-i...in-ranked.html

My RSD/CRPS pain is MUCH worse than the post surgical pain I've had.

"I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain."

THESE ARE THE REAL ISSUES. ^
Worrying about what your family thinks, let alone some random health care provider, is just a distraction.

To not allow you Lidocaine patches is frankly silly. They provide temporary relief and are not going to interfere with tracking your results from the gaba. They certainly won't get you labeled as a drug seeker. --It will take several months at a minimum to adequately test out various meds. That doesn't mean your doc should allow you to hit rock bottom in the meantime! Prescription strength melatonin will deal with the insomnia. Sending you to a pain psych doc so you can learn to breath and meditate will help. Finding a warm water pool for you to rehab in. Those are a few examples of things your doc should be suggesting.

It might be difficult for you to find a more experienced RSD/CRPS with your insurance options, but you might not have a choice.

From Always Believe "I've been without MD's/PT's/pain medication since September. I'm grumpy. I'm irritable. I'm depressed. I can't sleep well. I can't perform normal daily functions. I can't do anything physical to lose this damn 35 pounds I've gained. I can't focus. I'm in pain. And I feel like I can't ask any of my current doctors to do anything about it because the one I did (my PCP) informed me she doesn't prescribe narcotics - ok, great, no problem, how about some lidoderm patches? How about a PM referral? Her response is to try to keep increasing the gaba. Slowly. And maybe, someday, when the wind is blowing the right way she will refer me to PM. Until then, I'm in pain."[/COLOR][/FONT][/QUOTE]



Reading this now I am sorry I skimmed past this post and responded to an earlier one. Aaack! I would've said something. My only is excuse is that yesterday I was focused on prep to go to Houston and getting my son squared away beforehand. Today was hopefully my last injection set to hydrodissect scar tissue in my ankle. So not fun....

It is no wonder you are grumpy, irritable, depressed. I am irritable for you and the delay in referral. Would your PCP maybe be more amenable to a referral for Physical Medicine and Rehabilitation? These guys are used to debilitation and pain. Some of them do a fair amount of pain management. I'm thinking maybe with the functional limitations and PT the PCP might go this route and it would at least be something.

I think more and more the pool would be so good for you. It might be worth a call to the Y to see if anyone in your area goes in on a regular basis. Also some of the churches have volunteers who drive people for appointments and such. There may be some kind soul willing to help out. I know an avid swimmer who lives 45 minutes from a community center with a pool who makes the drive routinely. She is a retired cop and wouldn't hesitate to give someone a ride when she goes.

Lastly, I know I said it before but I'm gonna say it again. Think about Mayo. It's in striking distance, they love changing people's lives and they do 100% write off depending on income level. They have pain, ortho, PM&R, the whole shebang. You could get that whole multidisciplinary thing going. I am sure they have a place people can stay that is underwritten by their foundation. Stanford does, Seton in Austin does, regardless of what hospital you go to in Austin. What have you got to lose? Call and talk to someone at their concierge office or bug a social worker. A hospital social worker will know how to get you set up. If they don't know they will find out. It's what we live for.

I am sending Healing Love and prayers for rest and restoration.
Littlepaw

Good to hear you fightin' again! Thanks for appreciating my sometimes obnoxious tendency to say what's on my mind. I was not very clear about the block reference. I just meant that I had read about them being done so people with CRPS could tolerate rehab. The point being that the rehab is that important, not that I think you are or should have blocks done. You'll decide that for yourself once you get to PM.

I am sorry it is such a battle with doctors and finding them. So tiresome. I myself am now looking for a new neuro as I want to try low dose naltrexone and mine won't prescribe it since it is a "controlled" substance. Hilarious! not sure what the abuse potential is unless I planned on overdosing on heroin or something.

You keep at 'EM! I will keep rooting for YOU on YOUR side! And taking some hits and bruises here and there too...

Littlepaw

AB,

I wish I could enlighten you on how to move forward, but all I can do is offer a relative perspective and hope it helps.

I found comfort in a really strange paradox. Hesitate to write about it because it might not make a whole lot of sense when put into words.

But here goes. I would point first to your screen name.

I always believed there IS a reason for everything. In Einstein's words, "God doesn't play dice." (Paradoxically, I didn't believe in "God" either, but this forum is about healing from RSD rather than religion.)

That belief led me to many understandings, because within my own relative experience, it turned out to be true.

The first and maybe the most important understanding was this: just because I disagree with something 100% - just because it makes no sense to me - doesn't mean it's not 100% logical.

Saying that "There is a reason for everything," is the same thing as saying "Everything has purpose."

And eventually I came understand that everything - even accidents - are actually purpose veiled by my own ignorance.

That started with openmindedness. A willingness to admit and then to accept my own ignorance. My own powerlessness. And that's what I hear from you AB, and that's why I wanted to post, even though this could just come off as a crap ton of nonsense.

But then how to apply openmindedness to where I was? I mean, how would any of us here on this board apply something like that? Where I was, was in excruciating pain and suffering that looked hopeless from every single angle I looked at it. To truly apply "there's a reason for everything" would either be saying that this is 1) God's fault, 2) someone else's fault, or even worse - 3) this is my own fault.

Now that's a scary thing. But I didn't have anything to lose. My worst fear was helplessly withering away in pain hurting all of the people I care most about, and that's exactly what was happening.

So I surrendered. Admitted I didn't know CRAP. (And still don't.) So I went with option 3 - this is my own "fault."

But the key - and I can't say this enough - was in how I went with option 3. Rathering than putting blame on myself for how things had turned out in my life, I accepted responsibility for it. All of it.

And I know that sounds like a bunch of fluff... philosophical BS... but I can't overemphasize how important this was. For me at least. Accepting responsibility versus Placing blame. Two sides of the same coin. Truly different perspectives.

This led to the craziest paradox. Admitting and accepting that I was completely powerless - surrendering to it - actually gave me the power to change. Accepting the fact that everything that had transpired in my life had led to this moment, right now... Regardless of how "good" or "bad" I was in the past, HERE I AM.... it was a fundamental shift in perception for me.

What it did was two things:

1) Allowed me to forgive me, God, and everyone else for how awful my life had become.
2) Set a clean slate for the future.


PS. Many of the reasons as to why we have to deal with something as awful as this aren't definable within our current perception of reality (ie this space of time we're occupying from birth to death.) That's why this is so tough. (Understatement of the century. Or millenium.)

And most importantly AB - KUDOS to you for everything you're doing.