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Posted 12/28/2011 1:58 PM (GMT 0)
Hello

      I was diagnosed with R.S.D. 12 1/2 years ago . I am happily married to a man who does not know real pain , other than a toothache and sore back . I am looking ( or maybe the correct word is needing ) for others with my condition , to communicate with , someone who knows what R.S.D. is and the terrible pain we live wth daily . I am in a wheelchair , a right ( above the knee ) leg amputee , caused by R.S.D.

      Before I developed R.S.D . I was a full time wife , mother , and ticketed carpender. Now I am very thankful that my youngest child is now 28 , and on permanant W.C.B. Disability and no longer able to work .

       I was diagnosed by 1 of 2 leading R.S.D specialists in Canada . I am new to forums or chats . Do not know what to say , or where to start , so please if there is any body out there with R.S.D. , or even if you think you have it and wish to chat , please email me .

 

                                                                           Sincerally bclady

 

      
Posted 12/28/2011 2:20 PM (GMT 0)
Good morning bclady!

Welcome to the Chronic Pain Forum!

Well….for starters….you have come to a great forum for support….as all of us suffer some form of chronic pain here. You will find out quickly that we truly do understand. Now,…I myself don't suffer from RSD, but we have a few members that do. Hang around for a bit, and lets see if they come out of the woodwork to help you.

Also you are not alone in living with a spouse and or family members who do not understand chronic pain. I'm curious at to wether or not you are seeing a PM for your pain management?…and if so….would you be willing to share what type of med's they have you on?

The more you can tell us about yourself, the better we may be able to offer suggestions to you. Now,…were not Dr's here, but trust me….many of our members have a lifetime of experience and will share openly with you.

I'm so glad you found this site!….and I think you will see why after you spend some quality time here. Feel free to browse, and we encourage you to use the search button in the upper righthand corner of this page. I always tell new members that you will get out of…what you put into this forum….and I encourage you to get to know the members.

Good luck, and Enjoy!

SE wink
Posted 12/28/2011 2:43 PM (GMT 0)
 Thank you screaming eagle for yor welcoming reply.

  some of the medications they have me on are :

   Duralgesic patches ( basically morphine ) 200mg every 2 days

   Oxcy. 90 mg - as needed

   celebrex - 200mg 2x daily

   Gabapentine , anti spasmatics , anti siezure meds , high calcium

   to name a few , I am also precribed medical marajiuanna , that and methadone were probably the hardest ones for me to take , ( due to the stigma attached with taking these meds .) I hope that this helps , if there is anyone who has tried something different for the pain please let me know , after all these years on the pain meds I have run the gauntlet a couple of times . I would also like to know if there is anyone who is more than 60% pain free , I live in the very very fridgid north , and as R.S.D. sufferers know cold is very very hard on R.S.D.

                                   thanks and I look forward to talking with all who care to write .

  

Posted 12/28/2011 3:02 PM (GMT 0)
Thank you for sharing more about yourself with us. Also…we have forum rules, and while it may be legal in your state, our Admin forbids discussions on the Medical MJ. Sorry!…and no apology needed! tongue

I think it might be a good thing to read the forum rules and I should have suggested it from the start. So…take a peek at them when you find some time to do so.

At any-rate, were glad you found us! wink

What mg dose is the Oxycodone? Percocet's?…or is it Oxycontin? ….or possibly the IR Oxycodone? ….have you tried Cymbalta? Lyrica a possibility?

SE wink
Posted 12/28/2011 5:32 PM (GMT 0)
Hi Bclady and welcome to Healing Wells chronic pain forum. I am glad that you found this forum, as no one understands pain like someone else that is afflicted with it no matter what the cause is. Its tough trying to explain it to non-pain people is about all I can say.

We do as SE said have members that have RSD. I know a bit about this horrid disease, I saw clients get it after having an injury or surgery. That was back when they were first dxing people with it.

Anyway, I wanted to pop on and tell you welcome aboard. Take care.
Posted 12/28/2011 6:16 PM (GMT 0)
Welcome BClady. You have come to the right place, as the others mentioned. We all suffer from some kind of chronic pain so we defintely can understand each other. I'm glad you found us but sorry that you are suffering so much.

I am sure Laura will be along. She has the same illness as yourself and she has a wealth of knowledge.

Hope you stay here with us. Oh are you from BC? I am in Ontario.

Welcome,

Suzane

Posted 12/28/2011 6:29 PM (GMT 0)
Welcome,

You have found a good home, if you need the companionship of others dealing with chronic pain. It's also a good place just to have a good old fashioned vent if needed, we can take it!.

Hope you find some comfort among us, we are all here for different reasons. I have advanced prostate cancer, and dealing with severe chronic pain related to having undergone radiation therapy incorrectly.

Wish you luck and friendship here.

David in SC
Posted 12/28/2011 6:59 PM (GMT 0)
hello, some interesting reading you might like is a journal about Howard Hughes and his RSD. website: Foresttennant.com under Articles
Posted 12/28/2011 10:19 PM (GMT 0)
Welcome to our family
So sorry that you have pain. All of us have pain its just in different places.
Please keep us posted on your health because we do care about you.

Happy New Year
Betsey
Posted 12/28/2011 10:53 PM (GMT 0)
Hi bclady, and a very warm welcome to you.

I too have had CRPS/RSD for 12 1/2 years - mine started after a knee injury and surgery when I was 14 and was made worse by another when I was 20. The last 3 or 4 years it's spread full body and internally. I'm so sorry that you've lost your leg to this beast. I have been lucky in that respect - I've had several bad infections, but we've hit them with IV antibiotics very quickly and been able to get on top of them.

I agree with SE - if the Gabapentin isn't doing a good job of tackling your pain, have you ever tried Lyrica or Cymbalta, or even Topamax?

Is ketamine infusion available as a treatment where you are?

Is it 'just' (I use the word advisedly - we both know there is no 'just' with CRPS :() your leg that is affected, or is it more widespread? If your left leg is okay, have you ever looked in to using mirror therapy for helping the pain in your right? (Or the same for your upper body if you've just one side affected)

Is a pain pump an option for you?

You mentioned calcium - what is your vitamin D like? I was on another CRPS forum for a while and we found that a lot of us had low vitamin D levels - mine was so low that it could barely be detected! Low vit D can contribute to bone pain and muscle cramps (which I know I get with the CRPS anyway) so it's always worth getting checked out. CRPS itself can also cause loss of bone density and I'd imagine that being in a wheelchair you'd have much the same problem as I do - that lack of movement is also going to contribute to osteoporosis. So it's even more important that you have good levels of calcium AND vitamin D in your body. I found this out the hard way a few months ago after I fell and fractured eight vertebrae, so I'm a bit of a fiend about it now!

I think that's all that's coming to me off the top of my head, but welcome once again. I'm glad you've found us, but sorry you've had reason to.

Laura
Posted 12/29/2011 8:55 AM (GMT 0)
  Thanks so much every one , I am sure that I will find this site helpful and already very welcoming .

   To answer some of the questions , Yes I have a P.M. , I am probably on my 4 by now , being on W.C.B. they like to send you to " ALOT" of DRs . I am on oxycodone IR . I live in Northern B.C. , but was born in Ontario . Thanks Spinal Soldier I will check out that journal .I was diagn. with R.S.D. after spraining my right ankle and tearing the ligaments , and after having an Evans repair ( surgery ) I was told the news . Did you say that you had R.S,D. internally ? I was told that it would not affect my core ? Yes I have tried Lyrica , cymbalta and topamax , very bad side affects . I am not sure about ketamine infusion , I will be looking into that thanks . N o my left leg is also affected , that is why I am in the wheelchair , osteoporosis so severe my bones are like sand , also swelling , blackish and not able to weight bear at all . As for pain pump yes , but I seem to be prone to infections at site , I am not sure of my vit. d level , again thanks and will look into that also . I also suffer from multi. lower back compressions . Every 3-4 months my pm and drs admit me to a Vancouver hospital that has a wonderful pain program , and give my a couple of days off from my R.S.D ( I call it my reprive ) and give me soome sort of bloke , it is soooooooo very nice I can not feel anything from my neck down , if I wasn't fully paralyzed I would highly recomend it permanently . I also have insomnia caused by the R.S.D. , and I really miss my sleep .The R.S.D is just starting in my right arm , and I am right handed .

 

    Now for some good news . I am very happily married to a great man ( a newfi ) lol . I have 1 daughter and a stepdaughter and stepson , 3 grand kids , and a very faithful crapzu dog . My daughter is 29 and lives about 1 1/2 hours away but my step kids ( kids hahaha , they are 42 and 40 ) they , along with all my grand babies live in Australia .sorry for my babbling , but it is so nice to talk to people that understand chronic pain and the depression and alllllll other side effects .

 

                           Jeanette

Posted 12/29/2011 12:31 PM (GMT 0)
Hi again Jeanette,

I'm sorry that yours is becoming more widespread - also that you have the osteoporosis and compression fractures to deal with too. It sounds like you are in good hands with your current PM and I'm glad to hear that. It's also wonderful that you have a supportive husband. Are the rest of your family supportive too?

With it starting in your right arm, I'd really strongly encourage you to give the mirror therapy a go for your upper body. It might not do anything at all, but it's a very benign thing - I've never heard of it making anybody worse. And there is always a chance it might help. As it's acute spread, I wonder if it's worth trying a stellate ganglion block? Even steroids (cortisone) would be worth a shot, unless you have other medical reasons to stop you taking it. My PM believes that there is a strong rationale for using medium to high dose cortisone in short bursts, and I think he's probably onto something. I've had CRPS in both arms for three years, but my right arm became very bad earlier this year when I had to have a PICC line inserted to manage cellulitis and the doctor hit some nerves. Nerve block didn't work, ketamine was a nightmare because of some very dodgy nurses. Prednisolone did help a little - not so much with the pain, but it did get the swelling down and help with the movement.

Internal CRPS - I guess it's 'popular belief', even among much of the medical profession, that CRPS is restricted to the limbs. The reality is that it can spread anywhere - trunk, chest, head/face, internal organs. In my case, this is abdominal pain and gastroparesis - basically paralysis of the stomach. It's complicated further by the fact that I'm on opiates, but began to develop when I was on almost no meds at all. It also flares along with the rest of my CRPS pain, regardless of pain meds. As my CRPS has progressed, I've developed other problems as well - I can't regulate my heart rate properly - these days it tends to be too low, but I was on meds for some time to reduce it because when the CRPS flared the rate would jump to 160-180bpm. I've also developed generalised hypotension and severe orthostatic issues as my CRPS has gone full body - on meds to keep my blood pressure at least at a low normal. Without meds my BP drops so low that I used to faint just transferring from bed to wheelchair - that's actually how I broke my back.

Where in Australia are your step kids and grand babies? Have you ever been out here? I'm near Melbourne, which is down in the south east.

Laura
Posted 12/31/2011 12:02 PM (GMT 0)
  Hi Laura

     My kids ( stepkids ) ang grand kids ( age 5-16 ) Live not far from u in Adielade ( sorry for the spelling ) .  I do the mirror therapy daily .

      Laura don't get me wrong and I am not trying to come across ungrateful , but I love my husband greatly , But , there it is that DAMMMMMM But , he is not very supportive of my condition . I have given him plenty of reading material ECT. on R.S.D. , have invited him to come with me to the Numorous drs. appt. , but to no avail . I feel all alone with my pain , if I complain of my pain , I am told to" POP ANOTHER PILL "If I am having another Bad Day and I am unable to have his supper ready when he returns from work , he does not say anything any more , but than again I've heard it before , Alot of it I blame on myself , you see before C.R.P.S. claimed my body I was a full time carpenter , mother and wife . I SPOILED my husband , his supper , bath ect . was waiting for him daily when he returned from work , ( for 20 years ) .

  My daughter (28 ) lives about 1 1/2 hours away and we are very close l I keep alot of information as to the progress of my condition from her , when they ( her boyfriend ) come to visit , which is not often , they both work fulltime , and I am geting pretty good as to why they should not come down to visit us .I try to ONLY see them on GOOD days ( as you know is not often enough ) . My daughter has taken so much time off from work she has lost a few good jobs , she has also stated that if it were to progress more she was going to leave her work and all and move home to care for me . I do not want that so there for the need to selective info. 

I am 17 1/2 hours behind you time wise . thank you for allowing me to vent a little , it feels rather strange , I have no one else to vent to and really I am not use to complainig. 

 

                             Jeanette

 

Posted 12/31/2011 12:30 PM (GMT 0)
Morning Jeanette!

I just happened across your latest reply this morning, and wanted to say….you found a great place to share here. Many of us are in the same boat, when it comes to a spouse who does not understand something they cannot see.

My wife started out this way as well, until she started to suffer the very same pain I had. Oh, she bucked it for a while, and refused pain med's as well…but finally it got the best of her, and a little light clicked on in her. I suppose I got lucky in that aspect, however none of us really wants to see our spouses suffer. She also is semi active reading the post here, and knows many of the members personally. Last year several of us met up in Florida for a small vacation….and of course all the spouses got to share stories with each other. I think it was good for my wife to witness this.

There really is no magic button to press so that your husband will finally get it. I do see that you have invited him to Dr's appointments…but he refuses. Hum!….that is a tough one….but keep working on him to go. My wife goes to most all appointments with me, and has become active as an advocate for me with the Dr.

I think you and Laura will have a lot to share together, since you both have the same diagnoses. One thing I wanted to suggest is to educate your family on your health, and share with your daughter what is going on in your life. It may be the key…in the long run to open your husbands eyes to this pain you suffer on a 24/7 basis. Be open and honest with your family…and take your daughter with you on your appointments if possible. She needs to know this!

…and by all means keep on sharing with the members here! After all!…this is a support forum! wink Trust me!….we do understand…and in a way become like family because of it. There is a FB page for CP patients (Laura is a member)…and I invite you to join it as well….if your interested….Laura can get you in there. It is a private page…so no family members can see what you post there. It does not replace this forum by any means….but is just another avenue for you to check out…..they have a good time there!

Take care,

SE wink
Posted 12/31/2011 1:32 PM (GMT 0)
Jeanette,

I'm sorry that your husband doesn't understand the condition. I experience similar with my family sometimes. I can't work (I'm actually a vet by qualification) but live home with my parents because the CRPS has caused dystonia that has left me in a wheelchair.

I'm not sure if it would do any good, but something I have shared with other CRPS patients who are having trouble with family/friends - sometimes it helps, sometimes not - is a television interview I did about 2 1/2 years ago. They allowed me to be brutally upfront and honest about what it is like living with CRPS day in, day out, and also interviewed some very knowledgeable doctors at a hospital up in Sydney who have helped to explain it from a medical angle. The video is available online here if you think it would be any help: http://www.abc.net.au/catalyst/stories/2621515.htm

I've actually taken the liberty of sending you an email as well - I hope you don't mind. Not only do we both have this beast of a thing in common as I said - we've also had it the same amount of time, and by the sounds of it got some similar complications - the osteoporosis, the compression fractures.

Wishing you a Happy New Year, and I hope that 2012 brings you less pain.

Laura
Posted 12/31/2011 7:28 PM (GMT 0)
Jeanette you will find it a little easier each time you come here and vent and just say what is on your mind, things that you would normally not say to anyone. Here everyone understands where you are coming from. Husbands are usually the fixers and when they can't fix us they are dumbfounded by it and have no clue what to say or do next. Years ago if i complained to mine about being in pain he would say to me, I know what you mean. That use to just make my blood boil because he had no idea how I felt, because it was my body hurting not his, lol. I learned quickly to just keep my mouth shut and keep going. I decided the best thing for me was to say nothing to no one, I do not recommend that to everyone, we just have to do what we think we need to do and how we need to do it.

Please keep coming and letting us know how you are doing. Take care.
Posted 1/4/2012 6:02 PM (GMT 0)
Hi, Jeanette, I'm Kristi, better known as Rhaevin. I'm so glad you found this site. Myself I've been gone for many months, but realize this place is to important to my mental health, regardless it's getting to difficult to type.

Like you and Laura I have CRPS. I've only had it for over four years now, and like most of us, gone through hell in the process to get diagnosed and treated.

But this isn't about that, this is about a spouse that has a hard time grasping the concept. I want you to know the fact you've been married so long is a good sign. I was married for less then six months to a man who said he "understood" my condition and had no qualms with it... later he flung in my face how my pain got in the way of his happiness and it went down hill from there. Since then I dated an old friend briefly, but that too failed. I'm trying to come to grips with the fact that aside from my folks and my son (he turned 9 today) it's just me and my service dog. It's not how I wanted to spend my life.

I found, especially for family and friends, the best way to help them try to grasp the concept of what my life has become is to feed them as much info as possible. Not just about the ins and outs of CRPS/RSD, but articles from others. It's like trying to teach a child something: your kid won't learn or listen to you, but a friend or teacher has no issue getting them to listen/do. Sometimes they need to hear it from somene else to get a better perspective.

I know Laura should have a link, if she hasn't shared it already, of an interview she did. I can supply a link to an article in Time Magazine for one that was done on me a year ago. Perhaps hearing it from someone else will help him understand what you're going through, grant him a bit more patience, and make him realize just how special and important he is to you. There is no better emotional support then family and loved ones.

As I have recently forgotten, I ask you to remember with me: You're not alone.

--Kristi

Posted 1/4/2012 6:16 PM (GMT 0)
 

      I wanted to quickly pop in and say hello to Rhaevin!

           We have not seen you in a very long time, and I hope you are doing well!

     Take care,

   SE wink

Posted 5/6/2012 1:52 AM (GMT 0)
Hi Jeanette,

I am so new to this forum but reading your words I feel like I should reach out because I have had issues with family and especially with my husband understanding my pain.

I was only diagnosed with RSD two weeks ago, but it started six months ago ( I know that most of you have so much more pain and time with pain, but I am done apologizing for pain, so I claim my voice, even though I am fairly new to this... thank you for listening) .

I was mis-diagnosed over and over by podiatrists and e.r. doctors, x-rays, mri's, orthopoedists, etc. Everyone told me they didn't know what was wrong, or that it was "probably a" this or that. I was told fracture, tendon tear, bone bruise, ganglion cyst and other things, (a couple of these were true, but would have healed in a few weeks) but after four months, one dr told me about RSD and I just knew that was it.

I told my husband (who is wonderful and supportive, but has never had a broken bone) and he refused to accept it. I ended up feeling like I was going crazy for a little while, he would tell me that I was self-diagnosing while trying to research it, so I put off treatment and I really regret it. I would end up in a ball on the bathroom floor, not being able to breathe because the pain was choking me and having no one to talk to was the worst. I didn't want to bother them and I felt like I was losing my mind. Tried naproxen (made me shake and nautious), now on gabapentin and clonazapam (sp?), and seems to be maybe working, I don't know any more.

After I finally got an appointment with a neurologist, who diagnosed my RSD without an EMG because I kept a photographic journal of my foot ( initial injury was stepping on my foot with my other foot... good lord, if we could take back time) and the color/swelling changes, along with temperature changes,..... well, he didn't need an EMG. I am getting a 3-phase bone scan soon and starting nerve blocks...

My dad was with me for that and he has been tirelessly trying to find some answers...

My husband went into total denial. He berated me about being depressed and because I don't have all of the symptoms all of the time ( I can touch the affected area usually without pain, but all of the other symptoms are there) . He yelled at me because I was scared about becoming suicidal.... I think if I was not so tired and lost, I may have punched him. He is a good man, but it is so hard for someone outside to understand.

I know my journey is just beginning, and I don't have answers. I just wanted to tell you that you are not alone.

I have a nine year old daughter, and I am most sad that I may not be the mom I want to be.

My pain peaks at night (is this common?) and it has only spread from my big toe to my entire left foot so far. I am confused and to not have supportive people who believe or understand is the worst...

I feel for you and I hope your husband finds a way to understand and support you. I think that this is the most crippling part of this for me and I hope you find the support you deserve.

Don't give up hope. We can't give up hope.

I am going to a Calmare clinic on Monday to try this type of treatment.

Has anyone else tried this treatment?
Posted 6/28/2012 11:30 PM (GMT 0)
I have had RSD for 17 years. Until my husband broke his back in Dec '09 I;m not sure he knew what pain was or is. Now i'm sure he does, yet he doesn't understand the migratory nature of mine.

Physical therapy whether you do your own or you can go do it with a professional is a must. You must move even if it hurts. If you sit still and it hurts, you might as well move. If you don't, you will lost your ability to move eventually and then what? So MOVE! Doesn't matter how much or what it is, do it. Even if you can only move your arms, do it.

Along with moving, you also must REST. I have a move/rest composition to most of my day. And I try to do one thing every day that I enjoy, whether it be a show on TV or music.

Another thing most people don't want to hear is that DIET plays a major role. Sugar and bad carbs can be devastating to your digestive system and cause you to be very sick. Caffeine and anything that boosts your metabolism can be detrimental to your RSD. It is a wise decision to try and follow Dr Hooshmond's 4F diet of Fresh fruit, fresh fish, fresh veggies etc. You can Google him under RSD Puzzles.

Social interaction is critical. You have to learn to not be bothered by what people think about you. I am blessed to be part of a Bible study that also have people with cancer, fibromyalgia and other health issues. We are all very supportive of each other and there for one another. Wednesdays I do this and then Sunday go to church. If you aren't a church goer I suggest getting involved in the local boys/girls clubs or find some place to volunteer with older folks somewhere. Getting your mind off of yourself is half the battle. And yes, you still are important and you can contribute to society even in PAIN. I know I do it when I can. And it's ok when you can't.

The biggest kicker is understanding that this pain may never go away, and you can't run from it. But there are things that you CAN do-read YOU!!! can do to lessen your pain. The above suggestions have helped me immesly.

I take 800mg gabapentin (generic Neurontin) 3 times a day
that's it
oh, and I take supplements like probiotics too

I do not take opiods or any narcotics unless i can not control the pain. But because I have remained mobile and refuse to give into my pain, unless you hear my voice on bad days, or see me limp, or in pain, you wouldn't know it.

I don't advertise it. I don't have to LOOK disabled. I don't LIVE my disease because it does not IDENTIFY who I am. There is still a person in here. One with orthodics because of muscle wasting. One that has to find special shoes and has a lot of jeans because one pair may hurt one day and not the next. One who has chest wall pains, or panic attacks. One who can't write one day or speak the next. But there are books to read and things to grow. people need me. ANd I bet if you look around, people need you too.

Get your mind off of YOU and onto someone who needs you.
Posted 6/29/2012 12:19 AM (GMT 0)
Hi Hopey and welcome to the chronic pain forum. I see that you have posted on a thread that is no longer active. A couple of the people are no longer active here. We ask all new members to start their own new intro thread so that all the members will see it and be able to give you a proper hello and welcome aboard. Perhaps you can cut, copy and paste what you have written above and use it as your intro post.

I look forward to getting to know you.....Susie
Posted 7/2/2012 2:50 PM (GMT 0)
Thank you all for your support. I have not signed on in a bit because I am going through the stages of denial and avoidance, and then the stages of belief and acceptance.

But I may have gotten good news today. I have been reluctant to believe it, but my neurologist told me today that my RSD may not spread and it may eventually go into remission. Thanks to all of the support, I may have caught it early enough for the treatment to work... Here is what happened, maybe it can help someone else out there in the world of CRPS/RSD...

My bone scan came back normal.....

I am not sure, but the calmare therapy may have worked. I am still in pain, but I have not gotten above a 6 or 7 and usually I hover around a 2-4 over the past 5 weeks or so. It may be the gabapentin, also.

Hopey, thank you for your positivity, and I admire your strength. I absolutely agree with you.

When I went away for the calmare therapy, it removed me from my "real life" for a couple of weeks. I spent ten days away from my work and family, in a lot of pain, and having strangers apply electrodes to my foot every day. I drained my bank account and I felt like it didn't work, but during the process, I started evaluating my life and my attitude, and I decided to not let this stop me.

Since then, I have started living again, with the pain, but it seems to be less. Maybe positive thought is the best medicine.

I wish all of you happiness.

H
Posted 7/2/2012 3:00 PM (GMT 0)
 

     Hello Hope!

           Would you please start a new thread, as this post was started by another member. When a member post their own information on another members thread...it's referred to as Hijacking. You will get more replies this way! wink   This is also an older post, and the orgional poster is not here with us any longer.

     Thank!

 SE wink

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