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

I have a feeling my PCP is on her own personal mission at my expense. That, or she is taking it too slow for my advancement. I think she is forgetting how long ago this started and my physical need for pain relief/rehabilitation is growing and the door is closing. After more phone calls and emails, I have gotten my PCP to discuss my case with a neuro who is close enough but takes my insurance on a 'case by case' basis. I am keeping my appointment with my ortho for Monday in hopes to get some additional MD on board. My hope is that he will see beyond the bones. If he doesn't, perhaps he will see how the osteoporosis affects the arthritis pain and the correlation of that pain in my rehab.

As for Mayo...I have looked into a few things there. They do not take IL medicaid. Perhaps there is some study I can be a guinea pig for. I will keep looking.

Thank you again for your love, hugs, prayers and support.

It's a good idea to still go through with the ortho...if you feel he is focused too much on the bone issue, have him write a script, if he's willing, to see if you have RSD/CRPS, nerve entrapment or some other nerve issue....this might help a little for that neuro doc to take you one....key...might...

I had an EMG/NCS in late March 2014. Confirmed peroneal nerve palsy. My ortho at the time said while it was "close" to requiring surgical intervention, he wanted to take a "wait & see" approach. My current ortho has zero clue what RSD/CRPS is and doesn't really care as far as I can tell. My PCP diagnosed it as RSD/CRPS my first visit with her. I am, after almost 2 months, on LESS gaba than I was when my last ortho took me off of it(in June 2014) because there wasn't enough improvement. My insurance requires my PCP to write referrals to all specialties. She has so far written for ortho, endocrinology and neuro. Ortho wrote for PT but the eval alone left me unable to bear weight for the remainder of that day and I have had a variety of issues since. I can't move forward but I can't stay here either.

As for Mayo...I have looked into a few things there. They do not take IL medicaid. Perhaps there is some study I can be a guinea pig for. I will keep looking.


I don't know if their not taking Medicaid is an issue. It might be. They make a point to tout the 100% write-off though, so the question is does that mean total coverage of costs or only of the portion not covered by insurances. I think they have a pretty good charity program. If a care coordinator can't tell your then ask to talk to a financial counselor, they typically know how to get things written off.

Good luck!
Littlepaw