PhysiciansforPatients - Created by physicians. Made for Patients.

Doug

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Sorry to hear you're also suffering the inequities of military healthcare.  The military will rate symptoms such as atrophy, swelling, bone density, and anything they can SEE, but they will not rate pain.  If a CRPS patient has no visible signs, they may not be rated at all and get nothing.  I had other problems like paralysis in my leg/foot which were rated, but that's it.  I've since appealed that decision and won't hear results until July.  One only needs a 30% disability to get full military retirement which is 1/2 of monthly basic pay.  I've seen two ex-military people who had CRPS get rated with 20%--in which case they get a small severence check and NO benefits.

3 hours ago

Susan

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Hi :) Hope you are as well as can be and you're having a low pain day :)
I've been reading your articles and am interested to see the military med system from the American perspective. I am currently a soldier in the British Army and it took me 6 months until I was listened to properly and until I finally got a Headley Court appt. Even before that it took 2 weeks of seeing a doctor/nurse every day until they believed I was in as much pain as I was saying I was, it was ridiculous they kept giving me co-codamol and telling me to rest it, how am I supposed to rest something when it hurts no matter what??
I couldn't understand at the time why they were being so thick but then as time wore on and I finally got a diagnosis in the september (it started in Mar 09), and then got a chance to research it and found this site, I understood a little better why they'd had difficulties but now a year on they're pushing me to be more active and to do my physio/rehab like a good little girl when I feel like screaming at them that they're a year too late. Although I am forever thankful the med system here is a lot tighter for anyone on active service but not thankful that even though a great number of military personnel end up with CRPS, the people that give first line services aren't taught about it until after they realise they have to treat someone with it.
Although the compensation system seems to be very similar, as CRPS is rated over here as a physical disorder i think which means an amputee without his foot gets £900 a month for life and £60'000 as comp but a CRPS sufferer that has as much use and loads more pain gets only £30'000 and £400 a month for life.  I don't understand the injustice of that- why is an amputee worse off? Do they not realise many CRPS sufferers would prefer to not have the limb than be in constant pain???
Sorry to go on, you're one of few military people on here :)
Big hugs and if you still here, thanks for reading :) From Sus

21 hours ago

Doug

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http://members.home.nl/teabijker/lieddystrofie.htm

23 hours ago

hopeforall2006

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HEY DOUG,

  OH THATS OK DONT EVEN BREAK A SWEAT ABOUT IT.ITS NICE TO HERE FROM YOU!!BE WELL AS MUCH AS YOU CAN THAT IS! LOTS OF HUGS AND PRAYERS SENT YOUR WAY!  LOVE HOPE!!

last week

Kiki

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Hi Doug - you're SO great to write.  You know, I'd have to say that the main pain is in my paralyzed leg, especially the foot.  I never thought you could feel when you were paralyzed until this and whew - what surprise.  You know, I think you are probably the only other person with RSD and leg paralysis I've met in 15 years.  Don't have to answer if you're uncomfortable - just wondering if you go to a pain center or neurologist, or what type of doc you see. Thanks for letting me know.  Your leg in the pictures looks as though it would be the most painful - but it's the foot.  My leg hurts more when often when I get spasms but I'd say 99% of the pain is in my foot as well.  Kiki

last week

Sarah

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Hi Doug, Thank you AGAIN! I look forward to hearing about your Holistic studies., very exciting.

I find it so fascinating how one thing works for one person and not another. I don't really see anyone I have on the site saying "this works! I am fine!" However, I love the support and constant new ideas. It seems we are all trying, it really would be so easy to give up with constant, high, high pain.
Just for information, the TENS unit didn't do poop for me, my hands just sort of twitched, and that was it. I am currently going to a person who does body work, amazing! Seems to soften things for a day. We are going to try cranial sacral (among other things) to see if that helps, I'll keep you posted.
Your friend, Sarah

last week

Doug

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I've got packages out to four Senator's on the Senate Armed Services Committee.  Finger's X'd.

last week

Doug

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@Hopeforall200, I didn't mean to mislead you.  I didn't write that song but found it while looking for something else on the internet.  

@Kiki, About 1/3 of my left foot has paralysis from the big toe to the ankle.  Strange as it is, that's where the hottest pain pain is coming from.

@Everyone.  Thanks for all the hugs and kind wishes...Hard to keep up with everything lately.  I've only just begun to fight.  Here's my response to a letter with questions someone asked me.  I hope it provides some relief to someone here:

Sorry to meet you under these circumstances.  I feel I'm one of the lucky ones after hearing about so many who have this disease full body.  How could anyone explain to someone else what it's really like to have RSD? It needs national exposure and more recognition, but it's difficult getting anyone in authority to respond.  I've even written several Congressman and Senators from both parties, and none have even responded--yet. It's like communicating with monkeys with their hands over their mouths, eyes, and ears.  Wow, what a powerful billboard or bumper sticker that would be...RSD at the top, with the three monkeys below with the words CONGRESS over the monkeys.  Hmmm, I'm going to have to think about that one:-).  

I was taking Lyrica, but stopped since it caused such a weight gain problem.  It caused an insatiable appetite.  They don't tell you about that...they tell you about the weight gain side effect.  Since coming off, the pain levels are slightly higher, so in my opinion the ill health effects of weight gain outweigh the slight pain decrease. 

We all have pain thresholds and mine is pretty high.  When doctors ask my level, I say it's a constant 5, but jumps to and 8,9 (you know, those wasp stinging pains or rattle snake bites that make you scream out wherever you are).  I then quickly say, if I put this pain on you-RIGHT NOW-you'd say it was a 10.  No one would ever believe we could be in such constant pain and take it without tearing up and screaming all the time...but we do get used to it up to a point.

I have Vicodin and Demerol on stand-by for the long lasting hard pain...but I've found way to control the pain in my own way which works for me without drugs.  Again, mine is not full body so I can do these things which help.

1. TENS unit..no more than an hour..a last resort.  It feels like I'm peeling off my flesh when I take off the sticky pads--even after I've soaked them in water.

2. Hot water spa @104 degrees.  There's something about this that causes my pain level to drop about 2-3 points for about an hour--then it creeps back up.

3.  Just plain 'ole oxygen.  I discovered it when I went into intensive care for the pulmonary embolisms caused by RSD. As soon as I was put on it, the pain levels decreased.  They wouldn't prescribe it for me though--much to my disappointment 02 is treated like a drug and they'll only give it to you if your 02 levels drop below 88 percent.  Well, I ended up with the PEs in my right lung, and getting a lung infection in my left lung with pleural effusions.  When they did a sleep study test on me, my 02 averaged 84.5%.  I've got the 02 now.  Never been so happy to have bad lungs:-).

4.  Elliptical machine.  It's the one device I can use which doesn't trigger an RSD attack.  I'm restricted now to 15 minutes a day due to the lung problem..but I cheat every now and then.  It hurts like hell when doing it..but after I stop...I guess it has to do with endorphins...the pain levels are lower for a while.  Sometimes 1 hour, sometimes shorter.  

5. Distraction.  Quiet alone time is bad.  I've gotten heavy into social networking on Facebook.  I've found friends there all the way back to Elementary School.  It's an amazing thing when you find friends that far back and start communicating with them again.  We have entire lives to catch up on. I have over 900 friends there now...and it's all I can do to keep up with the conversations back and forth...that's a good thing on so many levels!  Plus, I play an online war game called Mafia Wars, which helps keep my mind "military" sharp.  It actually allows me to use the skills I've learned in the military to defeat the bad guys. If not into War Games, many people get addicted (like my wife) to Farmville.  I haven't tried it.  One online game addiction is enough even if it only takes 30 minutes out of my day.  

I have some side effects from RSD that to me, are worse than the RSD pain. Loss of memory and tinnitus.  My pain management doctor prescribed Namenda for pain...but it didn't help.  But the side effects are amazing.  It is bringing back my short term memory and helping with tinnitus.  This drug is normally prescribed for patients with Alzheimer's. It is now being recognized for its other benefits and is being prescribed in Canada for tinnitus.  I was trying to find the cause of the sudden improvement of the tinnitus and narrowed it down to the start up of Namenda.  I still wasn't convinced that was it, so I went online and researched it--and found the Canada connection.   I immediately called the otologist and she was very interested in looking into that.  It's a very expensive drug though.  Without insurance, one could expect to pay $400 for a one month supply.

The outlook for the future caused me anxiety and depression.  I think those are natural side-effects of this disease.  For those, I've been prescribed Zoloft which I didn't believe would help...but it REALLY does.  Another one of those things I don't understand why it works...it just does.  I'm now able to focus on the positive and have plans for the future to include going after a PhD in Holistic medicine. Now that I've written it here, it will help reinforce my intent.  I found it helps to vocalize your goals to others.  I'm also planning on taking a trip to Ecuador once I've finally retired this Fall.  We have friends there that have invited us to come visit.  Even if I have to wheel myself around on 02, I'm going.  We all need something to look forward to!

For sleep, I make sure I do the spa at night to get my pain levels at their lowest, and Trazodone puts me in a sleepy state that helps me get to sleep...most of the time.  When the wasps come visiting, no amount of sleep medication will work and I have to resort to the "strong stuff" which for me acts like caffeine being injected into my veins.  It helps with the pain, but sleep is out.  The same thing used to happen when I socially drank alcohol.  I could never sleep until it was out of my system. 

All I can say is, as hard as it is...try to remain positive and set yourself a goal for the future.  There's Real Magic in that.  I read a book about the power of positive thinking from Dr Dyer http://www.drwaynedyer.com/ called "Real Magic" years ago and it changed my life forever.  I have not read any of his other books...since the first one worked so well I didn't want to jinx it:-). The premise of the book I found to be true.  If one focuses on the negative...negative things continue to happen.  If one thinks positively and can "imagine" and "believe,"  some outside power comes into play and little coincidences happen that help you achieve your goals.  I left the military in 1992 after an officer reduction in force in the rank if Captain.  I had always dreamed of being a Colonel yet my aspirations were cut short.  I never stopped thinking about it though. One day, I got a phone call and was asked if I would be interested in being a reservist...I said YES! All the things I needed to do to make Colonel...one at a time...began to come to me and kept bringing me one step closer.  In my career field, there are no reserve officers in the rank of Colonel.  I never for a moment thought I had a real chance.  When the news finally came I had been promoted, I thought back to that book.  I feel the same way about getting the word out about RSD.  I got one break with a news story...but it's not enough.  I CAN REALLY SEE THIS GETTING SOME HIGH LEVEL ATTENTION, but the timing isn't right yet.  Earthquakes and such came at the same time as my story was getting out and being told.  I think there was a purpose in that, and that in some way everything is connected.  As soon as one Congressman in another district  gets my story and shows how the military healthcare system is failing its wounded warriors, I think the Congressman in my district will be embarrassed into acting.  My opinion on this matter is, we should be fixing the military's healthcare first, before imposing a new one on the entire country.  It took almost 9 months before the military diagnosed me with with RSD.  While fully admitting I had it, when I met the military physical evaluation board,  I received 0% disability for it. It's not included in their rating tables even though RSD (Causalgia) as we all now know, has been diagnosed as far back as the Civil War.  It befuddles my mind when I think the first diagnosis came from the military and yet the military doesn't believe it's worth rating, when even headaches can be rated at 50%!  A 30% disability rating would mean full military retirement to any soldier.  I already qualify for retirement even without the RSD, but I'm going to fight tooth and nail to make sure the rating system gets fixed!   How unfair would it be for a returning soldier with RSD to get a 0% rating from the military and VA (which are two separate systems)?  

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That was most of my response.  I hope someone can find some comfort in it.

last week

hopeforall2006

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DEAR DOUG,

   YOU DID A WONDERFUL SONG ABOUT THE WAY YOU FEEL  THE PAIN INSIDE OUT AND WITH RSD.IM WITH YOU MAN.IM SO SRRY FOR YOUR POOR LEGS IT MAKES ME FEEL SO BAD WHEN I SEE THIS AND THERES NOTHING I CAN DO TO HELP BUT TO BE HERE AND TRY TO HELP YOU IN SOME WAY. I SEND YOU HUGS AND A HIGH FIVE ECT AND YOU DESERVE ALL AND MORE.I HOPE YOU WILL GET THE MUCH NEEDED PAIN RELEIF YOU NEED AND DESERVE. I HAVE FULL-BODY INCLUDING MY EYES,NASAL PASSAGE,MOUTH SO I KNOW HOW BAD YOU WANT TO BE PAIN FREE OR TO HAVE A SOMEWHAT QUALITY OF LIFE. HANG IN THERE AND PRAY SOMETHING WILL COME OUR WAY VERY SOON.TRY TO SMILE BECAUSE WE ALL LOVE YOU AND ARE HERE FOR YOU .YOUR NOT ALONE IN THIS AWFULL DISEASE.

          FRIENDSHIPS,LOVE,FAITH,HOPE!!! XOOXOXOOXOXOXOXOXOOXOX

last week

Kiki

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Hi Doug,  I have paralysis as well as RSD.  Sounds as though you do as well.  Thank you for the words for the song as well as the link!  Take care!  Your RSD friend!  Kiki

2 weeks ago.