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Posted 8/30/2014 3:52 PM (GMT 0)
Hi,
This is first time ever using this type of vehicle for communicating, patience may be required.

Mine is a 16 year plus battle with RSD which is now centralized into a central nervous system disease. I also have had all my life malignant hyperthermia . Autonomic dysfunction possibility for both in my case.

21 procedures done to try to break the RSD

Now I think I know why I have never done this before, it is so terrible to look back. My sister says she mourns for her sister who is still living.

Short overview of much longer story.

Will hope I can at least offer a nod to another of acknowledged battles survived.

Thanks to all who so regularly monitor and contribute,
Latin legs
Posted 8/30/2014 4:10 PM (GMT 0)
Hello Latin legs & welcome to the chronic pain forum. I am glad that you found us, you should fit right in here. One thing we understand is living with chronic pain issues.

I am very sorry to read that you are battling the animal of RSD. That disease is a complete different ballgame as you already know from dealing with it so long. Most people I know that have it usually either have some sort of trauma or surgery to trigger it. What caused yours, if you are not comfortable discussing it no problem.

One of our mods here at that this forum is a young lady with full body CRPS, the new fancy name they have given it. Laura is her name & I am sure she will be along some time to say hello & welcome aboard. I know it more as RSD such as yourself. I remember when the drs first started dxing it in people, everyone said there is no such thing as this, insurance companies would not pay for treatment said it was all experimental. It was a real mess for a while.

If you are in to reading, you may want to use our search feature here at the forum, towards the top & type in CRPS & you can pull up older posts to read. We do ask that you not post on those older threads as we like to keep them off of the main page. There is also a good chance that the member is no longer active here at Healing Well. You get much better coverage by making a new post if you want to ask questions about something.

Weekends tend to be slow so please keep checking back here as folks will filter in little by little.

Again welcome aboard!!!
Posted 8/30/2014 4:27 PM (GMT 0)
Welcome Latin legs-love that name! I look forward to hearing more from you. This is a great place to share and learn.
Posted 8/30/2014 5:39 PM (GMT 0)
Hi stray dog and Abilene,

Yes, my RSD (the new name does not flow off my tongue easily) happened after a double injury to same knee in two directions in one week, what should have been "simple surgery" turned into nightmare when upon waking in recovery I asked the nurse " why do I feel relief in my knee and a new and bizarre pain on the top of my foot". Well, from there forward has spread to both lower legs, both lower arms, a 5 day epidural helped greatly as it had spread up left leg and into groin,but only that outbreak was checked. Like most people with this disease it was many doctors and too long of a time before finding the great doc who finally diagnosed sent me on to a well known team for all the appropriate tests to confirm and rule out something else. All though it was going to be a long shot, they went to bat for me and I had 10 lumbar spinal, 10 Bier blocks, and a 5 day epidural. They told me the only reason I wasn't in a wheel chair when I arrived was because I was still walking on leg while trying to run a hotel. I had cracked teeth clamping down in pain, I had scars on my tongue from biting down on it but I had to keep going and I was not going to give up or let someone tell me that this was all in my head. Thank G-d my parents had taught me early on in life that doctors are not G-d. Still till this day I have had to fight for what I know is right for my care, not with my team, but with the wider community, insurance companies, other doctors have to be found who are willing to do the research on these 2 difficult diseases that affect my every moment and limit the sphere of my existence. Much too long of an answer for a short question but there are no easy answers to these two diseases.

My nickname of Latin legs was given to me as before Jennifer Lopez, I had her legs, a shapely ankle was how it was described. My boyfriend gave my the nickname it stuck amongst my friends.

Take good care, thanks for the shout back,
Latin legs
Posted 8/30/2014 6:28 PM (GMT 0)
Hey Latin Legs.

Welcome to HW.Wow,you have really been through the ringers,or,whatever the expression is.

Hope you have a low pain day,

Rick
Posted 8/31/2014 11:52 PM (GMT 0)
Thanks Tidal mouse,

I appreciate the welcome. I see for some of the other threads here that we both have tried various formats for pain relief. Isn't it funny how one thing works for one persons body and can't be tolerated or is non-effective for someone else. But I am glad to see you found something that helps without additional oral medications. Us long term pain patients have to be so concerned about our organs, our livers ect. With all the pharmecticals through the years.

But the body is in of it self such a wonder and enigma,and life as we live it can change in a heartbeat just based on a wrong step or turn of the body,or trauma from an accident.

Thanks for saying hi to one who too well understands.

Latin legs
Posted 9/1/2014 2:10 AM (GMT 0)
Hi Latin legs and Welcome to Healing Well Chronic Pain Forum. really sorry you have reason to come here but am still glad that you did! I think you will find this a pretty good place to come when your having pain! We all understand what it is like to live with pain, and we have a few people with the same condition that you have, so I am sure they can even relate to you even more! When your here your part of our forum family! We can't cure you! But we can lend you our ears and listen to you, and give you what advice that we may have, but always give you our support! When your here your not alone with your pain!

Again Welcome to the Forum!

White Beard
Posted 9/1/2014 8:13 AM (GMT 0)
Hi Latin Legs and welcome.

I'm so sorry that you are battling CRPS/RSD - I'm at 15 years with mine, and I've got widespread autonomic dysfunction too, though not the malignant hyperthermia issues that you are dealing with.

I noticed in your other post you mentioned the risks of surgery with both the MH & CRPS ... I'm not overly familiar with the former in humans - but I was trained as a vet before my CRPS got severe and widespread enough to stop me working - and I know in animals susceptible to MH you can, as a rule, use IV drugs quite safely for general anaesthetic...it's only the volatile gas drugs that are really dangerous. Is that the case for people? If you do require surgery for something, it would be worth finding a surgeon and anaesthetist who will consult with your PM ... There are precautions that can be taken to make surgery safer - using ketamine, steroid and local anaesthetic combined with lighter general anaesthetic for example. We always need to weigh the risks and benefits, but if you have a good doctor behind you there is usually a way if something needs to be done.

Laura
Posted 9/1/2014 11:21 AM (GMT 0)
Thanks to both White Beard and CRPS Patient,

Good morning, hope you were able to catch a few zzzz's at some point tonite.
Thank you both, I am so pleased to have found such an active site. The care for one another is so encouraging. I know that I try so hard to not show my family what I'm going through daily. Of course, they know but we don't talk about it. As a matter of fact the only time we do is DOCTOR DAY, ugh, no living in denial that day, no pretending I'm just home sick for the day and will be better soon.

For so many years everything was in critical mode and my kids and family were in the midst of all of it, the surgeries(which I had trouble with due to the MH). The Malignant Hyperthermia was not diagnosed until I had a full blown episode in my PM docs office, my blood pressure dropped to 24, they couldn't find a pulse, my son got ice packs from rehab section and cold towels on pulse points, as I come back from these it starts out that I can first hear you, then shortly after that I can hear and talk to you but can not open my eyes or move, those come back last. During that period I am having seizures. Who knew. My dr. says to me, this what you've been talking about all these years!!!

I was hospitalized for a week in isolation, turns out my white blood cell count doubles from the stress of the incident, but they ran tests to make sure it wasn't something else. The isolation was also to protect me from exposure while my immune system was vulnerable.

I have had these things all of my life, it runs in my family. The inability to handle heat,the need for air to be moving. But my Mom always told us we were just little English roses and didn't belong in the sun. By the time I was 7 or 8 I had been asked to please not stand in church in the summer as I would frequently have this happen. I stood up in 9 weddings and never made it all the way through one, of course after the first one plans were in place for a chair and a person to watch out and get me so I wouldn't disturb the flow of the wedding. I had my own outside and Jewish weddings are not long so I made it through the service but not through pictures.

It has become a constant problem though since the RSD and it is probably what will kill me, my body, my heart will not be able to take the stress one time and that will be the curtain call. But life is a terminal illness no one gets out alive.

I'm exhausted just typing it
,if you made it through you are too! So, enough for now of that.

CRPS patient, how did RSD sneak up and hit you with a hammer?

White Beard have read some of your posts, good stable advice. I may need some sometime.

I am fighting pneumonia again, this started in May and they haven't knocked it completely out,it keeps coming back. I am weary. I will admit it here, but no where else.

Here's hope that you will enjoy this holiday. May friends and/or family be in touch. I thank you again for reaching out to me.

Latin legs
Posted 9/1/2014 11:44 AM (GMT 0)
Hi Legs,

Welcome to HW. You're going to be happy here. I know that we all are glad that you found us (because this IS an amazing forum) but at the same time, I'm sure we're all sad that *this* is what brought you to us!

Keep posting, searching, asking, helping,...it's a group effort! Very active, too!

Welcome aboard!











M.
Posted 9/1/2014 1:32 PM (GMT 0)
Welcome Latin to the forum and yes sometimes it is hard to look back at all the losses CP wroughts on our lives. It's also therapeutic to share with others who can understand the meaning and why of it all.

This is a great place to do just that and if in that sharing we help others the losses don't seem so bad.
Posted 9/1/2014 6:10 PM (GMT 0)
This is a wonderful forum. I have relied so heavily on it through thick and thin! I have had to deal with doctors who were just downright rude, dealt with a surgery being scheduled, then having it cancelled 3 days before date! Just lots of bumps along my road that started years ago after a guy t-boned me, nearly killing me.

There is a good feeling that people here are going through exactly what you are, lending support. Even if they are dealing with a different situation, there is support from everyone.

Support helps a lot! I am not familiar with what you are dealing with, but you have my healing wishes headed your way. I hope you are having a "good" pain day. "Talk" to you soon!
Posted 9/2/2014 12:00 AM (GMT 0)
Hello again Legs.

I just now read your response.I 1st sought a Doctors help about 12 years.Like you said,different formats and different meds.

I really couldn't believe it when this particular Doctor decided to get me out of pain.

I had to Google some of the things that you are suffering with.But I do understand pain and physical problems that affect ones quality of life as does everyone here.

I searched for a Forum like this and stopped looking after I found HW.

Welcome again and make yourself at home.

Rick
Posted 9/2/2014 2:26 AM (GMT 0)
Hi again Latin Legs - I love the name by the way :)

I got hit after a knee injury and surgery when I was 14 (1999). I used to be really active and "outdoorsy" and was hiking with some mates when I had an awkward fall and twisted my knee. It was a pretty difficult area for access - bush too thick for a chopper, coast too rocky for a boat and no way was I dealing with the embarrassment of them carrying me out (tomboy teen girl!) so I walked another 20km on it the next day. Knee got worse and worse - eventually saw a doctor and ended up having a scope to clean up the mess I'd made of it.

Pain and swelling got worse and worse until I couldn't move my leg or bear any touch - it was actually hot at that stage, to the point I couldn't wear long pants because of the heat from my knee being reflected back from the material onto my skin. Thought it was infected but no sign of that. Got told to ice, which gave me a lot of relief, but the thing wouldn't settle. Three years later, still having just as many problems - surgeon told me it was all in my head, I was a "hypochrondriac, hysterical teenager" and the only help he could offer me was a psychiatric referral. I walked out to stop myself punching him. I asked around and found myself a rehab physio with a really good reputation - and though I still had no idea what was wrong and was still in a lot of pain, I got myself back to near-full function.

Always had pain- some days I'd limp, some days I'd have swelling, or funny colours, but I just "put up and shut up" as that's kind of the way I've been raised. Then in 2005 I was at work and one week got knocked down bringing an unhandled donkey in for treatment, and three weeks later fell 3-4m out of one of our hay sheds. My "bad knee" took the impact both times - and again I needed surgery. This time my whole leg hip to toe swelled almost immediately, turned ice-cold purple and was excruciatingly painful. They thought initially I had a clot - but when that was ruled out and things didn't settle my surgeon voiced those words "I think you have something called RSD..." :(

Since then I've been through most things available here - blocks, epidural, ketamine, various meds, SCS, a pump.

I've also been separately diagnosed with dysautonomia - as I get the impression you have? For me, I struggle to regulate body temp, HR, BP, GI function...and it's anyone's guess where the overlap is - especially as I've got a presumptive diagnosis of Ehlers Danlos Syndrome as well. YAY for functioning bodies....NOT. That said, I am a long way from where I was 3-4 years ago and very thankful for that :)

I'm sorry you're so unwell at present - sending healing thoughts your way.

Laura
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