Losing Hope
 

I was diagnosed with RSD in June, after arthroscopic knee surgery. I can tolerate the pain, numbness, and burning. But what I'm finding it difficult to tolerate is barely being able to walk. My knee feels "locked" to the lateral position, making me unable to bend my leg when I walk. Sitting and driving are difficult, as well. I've quit therapy, per my surgeon, and am seeing a pain management Dr. I am on Neurontin and wear a Clonidine patch on my knee. I have had a bone scan, which confirmed the diagnosis and just had my 2nd lumbar sympathetic block on Wednesday. I don't feel much of a difference. My quad muscle looks like it is wasting away compared to the other one. I can't seem to get a straight answer if the nerve blocks are supposed to help with mobility. I'm feeling depressed and worried that this may be as good as it gets. I hate going in public, because I feel the stares that I get from people. I'm not sure what else can be done, if anything. I have two more blocks scheduled over the next two weeks. What then?? Desperate for answers..

Nothing amazing you, me, we live with it. All of it. From the physical pain. The unwelcoming stares. The good days. The bad days.
As of late, I have to stop the new monster that developed silently in the back ground. Failure. Telling me to pity myself since I ve come so far, put up with so much.
It is what it is and I'll be damned if I don't go down with out a fight. That is what it is, a fight for every day, minute and sec. We are here for each other on those really hard days:grouphug:
So keep up the fight.

T,

I understand. I vacillate between being hopeful and being gloomy. I cannot walk unassisted, I use forearm crutches. In addition I think I have RSD spreading in both my hands.

I don't much care what others think about my appearance or the way I have to ambulate. In fact I wish more people could see me, but my energy level is so low I don't go out much.

My gloominess is from my exhaustion and pain. I can not do much and this distresses me. The pain is another factor. It limits me. I suffer from incredible brain fog. I feel like I am in a war with my body.

This morning I took an Epsom salts bath and after getting dressed, and then cleaning the tub I am beat. But this is today, tomorrow might be better.

If you have energy to go out you should use it, to do what you can and to keep yourself moving and keep your energy level up. Ignore the stares and flash a big smile at everyone. I literally dragged myself around stores last week, leaning on a shopping cart with my crutches in the cart. If someone made eye contact I beamed at them and guess what? They smiled right back.

Hi tlaymon,

I am sorry to hear you are having such a difficult journey. I know how disheartening and exhausting it can all be. But please, please, please do not give up hope.

You are still in the early days of your diagnosis and that bodes well for the future no matter how bleak it may appear right now. It can take much trial and error to find what works. Go about treatments methodically and when they don't work move on to the next.

One thing I would strongly encourage you to consider is consult with a peripheral nerve surgeon for a 'scratch-collapse' test to see if anything is entrapped or was damaged during your surgery. If negative it can put your mind at ease. If positive, it may be a game changer about what is possible to help you. You got my attention with the quad atrophy. The mantra for nerve injury is "time lost is muscle lost". If the atrophy is all CRPS then treat CRPS. If its nerve injury you can do something and the sooner the better.

You are in striking distance of the absolute best place in the US for this evaluation. Washington University in St. Louis. Unless you are in a major metropolitan area you likely wont find someone with this kind of training. I know it is a pain traveling for care, most of my team is 3 hours from me in Houston. However, I also know that these people can change lives. My peripheral nerve surgeon trained there and saved me from excruciating, intractable pain from a neuroma I got from a nerve injury during an ortho procedure. My CRPS came from a later procedure and has actually been less painful than the nerve injury. Go figure.

Here are some resources. Washington U gives loads of info on nerve injury and has the clinic contact info on the page.
http://nerve.wustl.edu

Here is a link to Nerve injury I put up in April that shows the scratch collapse test and has a cool atricle about surgery on a CRPS 2 young woman.
http://neurotalk.psychcentral.com/sh...jury+resources

I passed a recent follow up Scratch Collapse BTW. I was quite happy about that. Those problems are subsiding for me.

The CRPS is about a year out for me and I can walk over 2 miles at a stretch these days after months and months on crutches. I still have pain (that foot is just plain messed up) but am so much better than I was. I am able to enjoy life, but I have to pace myself and not overdo. It has taken time and constant dedication to getting better one teeny tiny bit at a time. It's been very gradual and six months ago I was still pretty darn miserable. I don't expect to get to 100% but I have gone from 30% to 70-75% and am holding out for more. I had a lot of help along the way from different doctors, one of them a Physical Medicine Rehab specialist. They have a different approach to pain and disability and may be of help to you. I also benefited tremendously from a therapist familiar with chronic pain and illness. She helped me get out of a deep pit of despair.

Hang in there and go after whatever you need, Consults with specialists, imaging, therapy, treatment. You are the one most invested in your recovery. Hold onto it like a bulldog. Others may give up before you do. Don't let this sway your determination. You are worth it and we are all rooting for you.

Sending healing Love,
:hug:

I also sometimes don't want to go out and be seen. But I don't care what strangers think at all. People are so wrapped up in their own lives and troubles I know they are not giving me much thought. I'm apprehensive about going out because of running into people I know. I live in a fairly big city, but every time I go somewhere I run into someone! Then I have to tell them the whole story about why I didn't get better from my injury and what is going on now. Even if if it's not someone I know, strangers will sometimes strike up a conversation and want to know what happened. My city is so funny that way, people just talk to each other whether you know them or not. But I still go out some, because it's worth it to me to get out of the house and not go stir-crazy.

I just keep plugging away, learning, trying one treatment, one medication at a time and hope that something helps me eventually. I hope you find a way to get some mobility back soon. Don't give up hope. :hug:

Just had a general thought about going out. When you spend months on crutches, walkers, and scooters you do notice people's reaction and cues. I found people (including healthcare staff) responded to me a lot differently when I wore athletic wear despite having obvious mobility impairments.

It is first comfortable..."Look Ma no zippers!" And secondly creates a different perception in yourself and others. Looking sporty coupled with going to the gym for even five minutes on the bike or 15 in the pool made me feel more like an active person with limitations than a disabled person trying not to lose what was left. Funny thing is, I never wore activewear outside the gym before this but psychologically it helps!

Tlaymon.
I was diagnosed in April following a mid foot/ankle sprain/avulsion fracture last Nov. It's been a long 9 months, much of it since April spent chasing my tail with no results. I too am sometimes embarrassed in public, especially at work where everyone has watched and expected me to get well. This illness is very difficult to explain. I also sometimes have a hard time seeing myself as handicapped and others viewing me this way. I care less and less about this though as time progresses.
I had 3 sympathetic nerve blocks throughout May that did did not work. I gave up hope partly because my doctor seemed to. I finally started my PT again but not really thinking I would have a good result. I started on Lyrica given by my ortho MD, since the PM doc didn't want to try any meds. After many months on a cane/walker/wheelchair I am finally walking on my own again. I didn't think it was possible. I can drive short distance now too.
Everyone has a different path to follow with this and what works for one does not for all. Keep moving! It will be backwards, sideways and sometimes forward, but don't stop and as hard as it gets try not to give up. Also have a good counselor to help with grief issues and have an appt. w/ a different PM MD. Best wishes to you. MAC

I would really encourage you to find somewhere to do warm water pt. If that isn't possible, then just find a warm water pool to swim in and to start your own exercise program. The more you move that leg in a non weight bearing situation, the better chances for recovery.

There are many meds and therapies to try. If you feel like you more support to help you through what will likely be one of the most stressful and difficult periods of your life, than look into seeing a pain psychologist or a therapist with extensive experience with chronic pain patients.

In addition to baths with Epsom salts, Epsom salt lotion works well to reduce my swelling. If you haven't tried Lidocaine patches, they can be helpful as well.

If you can afford to go out of pocket, i would suggest trying HBOT treatments (asap). I tried the treatments probably too late for my original CRPS site, but I had spread to one of my legs after a car accident and after getting worse for several months, the HBOT resolved my leg issue, which never returned. Worst case scenario you won't respond and will waste some money, but there are few side effects and it's not difficult IMO.

If you want to try either blocks or Ketamine infusions, I'd encourage you again to do them asap. The sooner you treat, the more likely you'll go into remission.

Biobased,

Thank you for your words of encouragement! I needed to hear this. I'm sorry to hear of your situation, however, I admire your positive attitude. I should be thankful for the good things I still have going for me. I'm sure I let my own insecurities get the best of me. I often feel the need to apologize to my husband, to my kids, for my condition. I feel like nobody really "gets it". I wish you all the best!

Littlepaw,

Thank you so much for the info! I can't wait to do some research! The pain management Dr. I am seeing supposedly specializes in RSD. However, I don't feel like he has given me much information at all. I'm so glad you made me aware of this, and I can't thank you enough. I don't mind the distance, if they can help. It's great to hear of the obstacles you've overcome, and I'm so happy that you are doing better. It truly gives me hope! This information you have given me could definitely be a "game changer!" I appreciate your time, and I will keep you updated. I would love to hear updates from you, as well! I hope things continue to get better and better for you! All my best!