Neuropathic pain and RSD. When is enough, enough?

[anmoro]

I’m writing while I am laying in bed, experiencing yet ANOTHER sleepless night. While 11:20, may not seem late, I am usually in bed by 9:30-9:45 so I can easily wake up by 5:30.

Anyway, A little background information. Im July, 2013, I was trampled and my left hand was crushed. I had extensive damage to the entire arm including a dislocated shoulder, compartment syndrome and massive tendon and ligament damage. I had pins keeping my hand immobile for 12 weeks to heal the fractures. Here we are now, almost two years later and I have the pleasure (not really) of suffering from permanent nerve damage and RSD (Reflex Sympathetic Dystrophy).

The hardest part of this battle is since most people can’t “see” the disability, they don’t understand it and trying to cope with the pain, mental stress, etc can be more than one can handle at times.

I have been on multiple medications for the nerve pain. I started on Neurontin and did fabulous. While the three times a day dosing was often a hassle, it could also be a blessing because often I didn’t need that nightly dose. Unfortunately, due to some interesting (one quite bad) side effect, my neurologist took me off of it. He then tried Lyrica which caused a whole host of issues. That was wicked medicine. Never again!!! After that, I gave up on medicine for a bit until I had a very serious RSD flare up. I didn’t sleep for 3 days, I lost function of my arm, I couldn’t dress myself, nothing could touch that arm (clothing, my other hand, soap, you name it). I was in so much pain I cried and screamed at just about everyone. It required steroids (injection and oral), along with high doses of Elavil to get me comfortable. Within a week, my arm was back to normal. The problem was… my brain was not. I was starting a new job and felt like I was permanently hung over. I weaned off the medication by switching to a lower dose. I still had relief (enough that I could perform my job duties), but was still feeling very ditzy. Eventually, I weaned myself off of everything completely.

I survived the winter with moderate (but tolerable discomfort). Recently, with the lovely weather changes, I have taken advantage of it and ridden every opportunity I can. My horse is my escape and my sanity. I tried to give it up and I was beyond miserable. I was riding once every two weeks or so, but this week, order 4/7 days. Mainly just walking with some trotting. It felt amazing. I was happy, I was easy to be around and it felt like life was back on track.

Well… thanks to overuse (nursing-seeing patients, riding so much, and increased stress), I seem to be having the start of a flare up again. For a day or two, my hand has felt like it itched horribly. Now, I am getting that lovely fire any sensation.

I guess I am on here, hoping other people have experienced these issues and can offer advice or input. My hand surgeon does NOT want me to quit riding. He knows how much it means to me. He does worry about my safety while taking medications such as Elavil. I am aware that this weekend I over did it. I rode, I cleaned tack (mine and a friends), I spent over an hour two days in a row shedding out my fuzzy pony, I tried to pull his mane (epic fail).

Does anyone have any thoughts, suggestions, advice (I know it is not legit medical advice and as a nurse I don’t care- I’m a bad patient anyway). Even sharing stories would be great.

Thanks in advance. :concern:

[csaper58]

Alright, you over did it and now you are paying the price. That sucks, but you have to live in your new reality.

If you got a new horse, would you expect him to do everything just like your old horse did? No, you would adapt.

Now, you have a ‘new’ arm. It may not be able to do things they way your old arm did, but if you adapt and work with it you will do more, and do it better, in the long run.

Does ice help? May be acupuncture? Be careful with the meds, do take them when you need them. Just remember they mess with your brain chemistry and can make you feel sort of hopeless, and depressed.

You have lots more rides to go on, so be sensible and take better care of your self.

[Laurierace]

Not sure if it is an option for you but there is a time released version of gabapentin called gralise that is a much lower dose. You may be able to handle that vs the three times per day dosing of a higher dose of gabapentin. Jingles, nerve pain is a special kind of hell you have to experience to really understand.

As far as when is enough enough? Short of suicide, never. I hope you aren’t ever at that point.

[beaujolais]

"He then tried Lyrica which caused a whole host of issues. That was wicked medicine. Never again!!! "

So very much agree!!

I cut my Neurontin in half. If I take half of a 300 mg. then wait 1/2-1 hour to take the other half, I’m fine. If I take 300 at once - fuzzy & tired head. (Yes, it’s in a capsule, not the neatest thing to cut in half . . . but so it is.)

Add in some Cymbalta at night, maybe?

I was ruined from too many years of working in medicine and lifting people.

Best wishes & soft hugs.

[Laurierace]

I am taking 900mgs three times per day. Ugh! Getting an epidural on Friday then can hopefully start decreasing the dose.

[beaujolais]

Best wishes & soft hugs to you too, Laurie. Are you able to stay awake on that dose?

[Laurierace]

Yeah, pretty much nothing makes me sleepy except benadryl. The gralise was nice but soooo expensive. I had a coupon for $100 off and it still cost $270 for a month.

[anmoro]

Thank you everyone for the words of encouragement!!!

As Laurie said, neuropathic pain is one hell of a demon and hard to explain unless you have experienced it yourself. As far as so low to the point of suicide. Definitely not anywhere near there! My horse is too much of an a-hat and no one would want him. Just kidding! Actually, I felt very depressed on Lyrica, cried repeatedly. Like cried in the middle of Target, because they had no bathing suits that I felt were appropriate for my body. I cried one time because I could not get my horse’s feed mixed in to a perfect mash consistency. I actually made myself crazy!

I will look in to the Grails, although I am hesitant about more drugs. Oh how I wish a magic wand existed to make like a lot easier!

[Laurierace]

Gralise is the same drug you that you were on just in a time release form. It may be lower enough in dose that you can tolerate it better though.

[RMJacobs]

I don’t have any advice for you, just lots of empathy. I have neuropathy in my feet, and before I started on gabapentin, I used to wake up at night with tears of pain running down my face. Add to that the need for decent sleep to keep rheumatoid arthritis at bay, and life just sucked.

Luckily gabapentin has been working for me for the past six months or so. I don’t know what I’ll do if it ever stops working.

Hugs to you.

Rebecca

[walkers]

Careful with those anti-depressants, Lyrica was about to make you think of suicidally. I used to treat people with RSD using some biofeedback and hypnosis. some people it helped,also meditation and NOT overdoing like you just described.
Yes it sucks but you must restrict your activity. You have to choose what is important to you and not do the rest, have someone else put your saddle on the horse, get a horse vacuum never touch another horse brush, if possible get someone to clean feet and untack for you. Your hand is only going to tolerate so much use in a day so make sure what you do is with your hand is very important to you ,like riding and you must let the rest go. You are having flares from over use and over use can will cause more pain . No washing dishes, no raking, no stall cleaning. I don’t know how you’re working as a nurse.
I do know what you are experiencing and really you have to accept that your life has changed and not keep using your hand as if it has not because it can get worse. Save your hand for what is vital to you.
So very sorry RSD especially in the hand is so painful. Get some help with sleep as sleep loss increases experience of pain.
See a pain Psy. It can be helpful.

[walkers]

No ice, never

[MustangSavvy]

Nerve damage really is a different kind of beast. It is dreadful.

[anmoro]

Wow! I love all of the input and private messages I have received. Thank you so much.

Anywho, this flare up seems to have calmed itself (thank goodness). I went to the doctor the other day for a migraine that would not break, and the injection they gave me really helped the RSD.

I’ve never tried biofeedback. I may have to look in to it. As far as medications, maybe the Grails will have less side effects. As I was telling someone earlier, the biggest issue for me (with medicines) is not feeling like myself. I admit, I am a control freak. When medications alter how I mentally feel (whether happy, sad, loopy, tired, whatever) I don’t take them. I remember after the immediate injury, it took unbearable pain before I would take the pain medications. I just don’t like feeling like I am not 100% in control. Lucky for me, I was never so bad off that I felt depressed to the point of giving up life. I have had friends that became that depressed from medication side effects but could not tolerate the pain without taking them. It really becomes a catch-22.

I guess what I need to do is get a grip. I need to understand that life is not what it used to be. I’m not the same person. Okay, so you can only see part of my disability (the hand does not have 100% function), but that does not mean that there is not something wrong with it. I have to accept life as it is. Sort of like a reality check. The problem is I’m not good with knowing my boundaries. I will over use my hand until I lose function. Why? Because I’m stubborn and refuse to take it easy. Of course, I pay later.

Anyway, I wanted to say thank you for the words of encouragement. In July, it will be 2 years since the accident (time has really flown). It has been a rough recovery, but I thank my lucky stars every day that I have my hand still and even more so, that I am alive. Things could have been so much worse.

So from now on, I will listen to my body. When it aches, I will rest. When it starts to be sore and I have a hard time doing basic horse chores, I will ask for help (which is so damn hard…stupid pride).

It is like Csaper said. I’m not the same person anymore. I need to adapt!!!

[Jackie_Cochran]

I have MS (minimal nerve pain), and I noticed something about cleaning tack. Whenever I get ambitious about cleaning tack I get WORSE!!!

The repetitive motion of working the saddle soap into the leather triggers muscle pain in my arm. The length of time required to clean a saddle, girth, and bridle is totally exhausting. Cleaning tack for several days in a row triggers new nerve pain. Cleaning tack is more exhausting than riding a horse for 30 minutes, and that really gets me tired!

Luckily for me and my tack I discovered lard. Avoiding all metal and rubber/plastic I work lard into the leather. If I use the tack for riding one larding plus spot cleaning can last for months, keeping the leather soft and supple. If I store the tack, one thorough larding can last for 1-2 years. The leather remains supple and soft.

Using lard has saved me from many MS exacerbations through the years. For me regular tack cleaning is definitely DOING TOO MUCH and makes me worse. Plus, some of the more modern tack cleaners have additional ingredients that really mess with my nervous system, increasing spaciness, making my coordination worse, and wrecking what little balance I have.

Luckily I have found that horses are very forgiving of handicapped people who do not lie to themselves or their horses about their disability. My horses knew something was wrong with me for over 20 years before I was finally diagnosed. Their attitude toward me improved when I finally admitted I was a cripple, though they still expected me to ride well. But I found that the horses at the riding stables were a lot more forgiving than my horses, who expected me to be able to stick on like I used to. So long as I accept my physical limitations and work within them I find horses, even strange horses, quite forgiving of my limitations. I just have to be sure not to hurt them (apologies are accepted graciously) and listen to them when they tell me I am messing up.

May your doctors find a solution to your nerve pain soon! Hugs!!!

[CHT]

have you tried Back On Track gloves?

Also might be worth trying Alpha Lipoic Acid.

I have been on Gabapentin, Lyrica, and Cymbalta, but gave them up due to their side effects and because they only helped with the pain, and not the underlying case. The ALA has helped me regain mobility as well. I do still have some pain, but I manage it with psychology.

[Laurierace]

I pissed the nerve off big time this week, I guess I will know for sure whether the epidural does the trick or not tomorrow. Hoping this is the last time I get cortisone injected in me. I have been tapped more than even the cheapest claimer.