[mollymoo123]

Today i went to the physiotherapist and they confirmed that i have RSD in my left hand and arm. Thanks to this forum i was prepared for this even though i was hoping for a basic nerve damage diagnosis and to hear "this is normal after a burn injury". Nope its got all the signs of RSD except for the skin discolouring, but atleast we caught it early. Probably because of all the reading i did on burn recovery and what to look for.

So I have been on 25mg of Amitriptyline for the past few days and its helping with the pain a little. Im going to try 50mg to see if there is any extra pain relief. The doc said to start at 25 and go no higher than 75mg. I think less is best but it has to work.

The physio gave me gentle excersises to try, which is much the same as my burn physio. Im not to push through the pain, but to stop before it hurts. Because i have been to the beach and the water has helped she has asked me to continue that while the weather is still good. This is great because im an hours drive from the clinic and its pool for hydrotherapy. Plus the beach gets me out and about and gets the dog excersised. Next week i will be starting Mirror Box Therapy, which ive read good things about.
Mostly at this stage we are focusing on pain management and resting my hand with gentle physio.

Personally, Pain aside, I feel my outlook on this is pretty positive. I was prepared and im just glad to be moving forwards and have some control over the pain so that i can atleast tollerate it most of the time. Im annoyed to be going through this after my burns, but i guess ive built up good coping skills from the first round of pain. I am bored out of my mind though so ill also be looking at some things i can do to occupy myself, esp on my "good days". I treated my burn injuries as time out and found a positive from the experience and ill do it again. I do know ill have my bad days but like before ill deal with them. At least ive got some pain relief now. Its made such a difference.

Can i ask one question? Before this set in i had started to work on getting fit. I was mostly running and really enjoying it. Because its my hand and arm, would it be a problem to start again or should i hold off? or try something else? I just know im happier and healthier if i burn off energy and am worried about not being active. any advice would be wonderful.

Thanks everyone. I hope at some point i can contribute to some threads on here.

[mrsD]

Several of our posters over the years used hyperbaric oxygen therapy for RSD. One gal bought a unit and has it in her home!

If you search hyperbaric in our search engine on the first page of the RSD forum, her posts should appear. Look back in time for them.

I cannot put a search list up for you..our software doesn't do that well, but I found 122 posts with that keyword in it.
This member is who I recall the most:
http://neurotalk.psychcentral.com/sh...ght=hyperbaric

If you do a name search on her you'll find all of her posts in members list.

Another way to manage RSD pain, is this...something new which helps centrally in the brain where the pain it interpreted.
RSD has a central pain component. Your mirror therapy is going to try and help with that too.

This link discusses the tDCS treatment and devices:
http://neurotalk.psychcentral.com/sh...highlight=tDCS

fmichael, at RSD is currently using this electrical treatment at home. You might want to post further questions to him or any other person you choose off that thread to expand the topic for you.

[mollymoo123]

Thanks MrsD
I have had a look at Hyperbaric Oxygen Therapy. My closest machine is in Adelaide (S Aust) Its a 4 hr drive to get there and im looking into it. I need to do a trip soon so I am trying to make that work. My cousin has used it and It helped his Cronic Fatigue.
Ill have a read of both options.
Thanks a heap.

[birchlake]

Molly,

I love, love, love your attitude! It is absolutely critical in hitting this condition head on, which is what you are doing. It took me a year to get a diagnosis, but after I did finally get the diagnosis in 2009 and then after a little bit of "woe is me" feeling sorry for myself, I attacked it and have had reasonable success. Things can get better.

A multi-disciplinary approach is the best one for CRPS. My team consists of a podiatrist, chiropractor, pain management doctor, general practitioner and a physical therapist who I now need to see only occasionally.

I have a "daily routine" which involves warm water soaks followed by full lower body stretches taught to me by my physical therapist. Then I do some yoga and meditation followed up by daily exercise. It's important to keep the body moving but of course not to aggravate the condition. The whole routine of mine takes up a good part of my morning, but it helps greatly and I wouldn't miss a day of it!

Any kind of hydrotherapy is great. I swim a lot too as I live on a lake. I think some sort of exercise is a great idea when it can be tolerated; just be sure it is something that you can handle and of course, ease into it and ramp up a little at a time. You could start by walking, then running very short distances, etc. and see how your body handles it; might be a good idea to check with your doctors before starting it.

You really need to find out what works for you. I've found that a combination of conventional western medicine as well as some complementary holistic therapies like meditation, massage, yota etc. are helpful. Below is a link to some complementary therapies to consider. Click on the link and then scroll down to the section titled "healing therapies A-Z".

http://www.takingcharge.csh.umn.edu/

Keep an open mind and don't be afraid to try things. (that includes different medications too) If something doesn't work, try something else. Nothing ventured, nothing gained as the old saying goes.....

Good luck to you and keep us updated!

[CRPSsongbird]

Whereas I am glad to hear the DID diagnose you, I'm sorry to hear it is indeed RSD/CRPS. Good though that it was caught early. With the right approach, and care plan you can definitely put this into remission!! I love you attitude, and wish you the best of luck! Don't lose hope and follow your doctors orders and you could beat this with a matter of months!! It is definitely different for everyone, and it sounds like you were already dealing with a LOT! Don't hesitate to ask questions, or contact any of us here for support!


Research and see if there are any specialists in your area for RSD. It can help tremendously! As well as be a bit of comfort to you as well. I have a Psychical Therapist, Pain Psychologist, Physiatrist, as well as my GP. Establishing a good solid medical team, that works together, from the beginning can be a rat benefit and asset on your road to recovery!!

[mollymoo123]

Thanks everyone.
Im still feeling positive, however i think im getting a little nerve pain in my other hand and left foot. Its minor and im hoping that that is all it is. Plus im starting to get a little rash on my upper left arm. Im feeling good considering though. Being on Amitriptyline is probably helping considering its an anti depressant. I have also upped my dose to 50mg and its really helping with my pain. I have moments where i can forget there is anything wrong with me.

I have decided to improve my diet, and although i am supposed to be on a gluten free diet, ive been quite naughty since my accident so im focusing on improving my diet. Ive been Vegetarian for 12years as well so I have no excuse for eatting badly...... bread is just too easy though. lol.

Im looking into meditation and gentle yoga for excersise. and i went for a walk this morning and it felt good.

I am starting to feel a little annoyed with the fact that im going to be stuck in a situation that i was ready to get out of. When i was burnt i gave up my rented house and moved into my parents place so that i could afford to recover and live until i was ready to work again. I was ready to move out and restart my life. Now im stuck here again and i dont know how long for. They are fine with this but i turned 30 last thursday and this is not where i wanted to be at this stage in my life. so i cant help but feel disapointed even though i can see the bigger picture.

Today im in a bit more pain and the Amitriptyline has left me a little sleepy, so im planning a quiet day resting. but latter ill go to the beach to soak my arm. At the moment im really interested in how people have mannaged their day to day lives in a positive way. Ive been looking at the resourses listed in the sticky posts. Im really glad to have found this site. I joined another before i found this one and never recieved a reply. So again thankyou for the support.

[finz]

Do you take the Amitriptyline in the morning or at night ? Because it can be so sedating, may find it helpful to take it at night....then it has the added benfit of helping you sleep better while not intefering as much with daytime fatigue.

Keep a close eye on the other "potential" areas. RSD can spread.

While I was a little older than you when my RSD started, I can identify with the frustration of feeling "stuck" and being dependent on others. I was used to having more than enough to support myself long before I got married. Now that I am disabled (and on SSDI, I don't know if there is an equivalent in your country) and in desperate need of a divorce, I feel trapped by my financially dismal future. My SSDI income might be enough to afford a modest future if it weren't for the $500 a month I'm paying for uncovered medical.....and that's with my husband's very good health insurance. I'll be out even more when I lose his insurance with a divorce and have to pay for Medicare plus a supplement. My parents had planned on being able to help me, as PATHETIC as that feels, at least it WAS an option. Now my mother's health has deteriorated and they will be looking at nursing home placement for her, which costs about $100,000 a year here. The frustration of being "trapped" here is even worse because I would like to live nearer to my parent's, who live an hour away, so that I could do something to try to help them. The family joke was always that they didn't need long term care insurace because they paid it by sending their daughter to nursing school. This isn't working out for any of us

I LOVE your attitude and hope that you will be able to get the pain issues fully under control so that you can get back to work and out on your own again soon. Hitting the "big" 3-0 doesn't help the feeling that you want to move on NOW. Give it some time.....and keep doing the positive things that you are doing for your health !

Regarding the running, I would start out with walking and see how it goes. With extra meds, I am now able to walk up to 4 or 5 miles a day, although I usually keep it to 2 miles to limit the pain/use of meds. My RSD is from TOS which is near my neck with heaviness and numbness sometimes going down my arm, but all the pain is near my neck, not down my arm. After 1/2 mile, I can REALLY feel more heaviness,numbness down my arm (which at rest I don't feel at all). Much of the time, I can feel a "click" as my arm swings forward and back and at about 30 degrees rotation in the pendulum swing I go from feeling my arm to losing feeling. It has occured to me that might not feel as bad if I wore a sling. I've ruled that out because a traditional sling would rub the bad area on my neck. I don't know if you could tolerate wearing one if you have a lot of allodynia on your arm between the burns and RSD.....just something to think about.

[mollymoo123]

Thanks Finz I take my meds at night. About 20min before bed. Before i started them i was averaging 2hrs sleep a night. The night before i started taking them i didnt seep at all and the next morning it hit me hard. I thought i was going to collapse i was just so tired. Im sleeping really well now. I thought it was just the pain keeping me awake, but ive been reading about the insomnia that comes with RSD. Plus i still had it after my burns. When i was in the Burns Unit I didnt sleep much and it set a pattern. Esp when i came off of the pain killers i was on. Im loving having sleep. Im starting to hae energy now. Yay!!!

One thing that im really grateful of here is the support we get here in Australia. I dont have insurence, but i am able to get assistance from centrelink, which is our welfare system. Its about $500 a fortnight for me. Living with my parents makes this not to bad to live on, i cant imagine paying rent as well with this. I used all my savings when i had my burns. I do hate being on this system though and having to answer to the Gov to keep money comming in. We do have a good medical system here so most medical bills are payed through that. My stay in the burns unit (one of the best in the world), and further treatment for my burns were covered. Plus now im only paying a small gap for doctors bills, I get meds that are covered by the PBS (pharmaceuticals Benifit system) at a cheap rate and i get my first 6 Physio appointments for free. I only have to pay for traveling because i live in a rural area with little resources. Im just lucky to hae a new GP here that understands my problems and i dnt have to travel for that. I think this probably is playing a big part in my mental state because i dont have these pressures. Im really sorry that you do. I know we pay greater tax here, but when you reap the benifits you really appreciate it. Especially after reading some of the stories on here. I really admire your attitude considering the pressures you have. Im not sure i would be so positive in your situation. But i guess we all have our difficulties.

I will give a sling a go. I decided not to run incase it makes my foot worse, but i went for a walk today and it was ok. So i figure ill do that for now. However the dog dosnt like the shorter and slower pace. lol. But because of this she does get a swim each day so she will love that. If i wear my pressure garments on my arm i should be fine with the sling. Thanks heaps for that.

[CRPSsongbird]

I will give a sling a go. I decided not to run incase it makes my foot worse, but i went for a walk today and it was ok. So i figure ill do that for now. However the dog dosnt like the shorter and slower pace. lol. But because of this she does get a swim each day so she will love that. If i wear my pressure garments on my arm i should be fine with the sling. Thanks heaps for that.[/QUOTE]


Be careful with slings!! Make sure to check with your doctor. My doctor told me that slings can sometimes exacerbate the hypersensitivity, because your body gets use to things NOT touching it, and the allodynia can get worse. I have a friend who (after 4yrs) pushed her RSD into remission, hers was diagnosed about 2 years in so it took longer. She advised me to CONSTANTLY rub lotion (non scented if preferred), as many times a day as possible. I don;t know if you can with your burns I don't have much knowledge with that. But I do know form talks with my doctor that cosseting your arm ,or protecting it, can make the pain worse , and speed up muscle weakness and increase your muscles atrophy. My physical therapist told me to use my arm as much as possible, without doing things that cause pain.

[mollymoo123]

i have been using water based and un scented moisturisers on my burn sites to keep the skin soft. I have been using it after i shower and using it to massage my arm. my arm isnt to hypersensitive, although its heading that way slowly. Until now i would say more the oppostite.
I really think im early days and each day im seeing new symptoms. yesterday i sterted with tremors and the hot/cold feel. So im guessing i have worse to come. Its only just under a month since it spread from just my middle and index fingers to my entire arm. Its also getting into my sholder now. and im really noticing the burning pain. grrrr. But im not needing huge amounts of meds to control pain and i can stil use my hand and wrist a little before the pain starts. I stop once it hurts.

Today is a bad day. I see what everyone means by the weather making it worse. Ive taken extra painkillers and am staying on the couch while its rain and wind outside. I also wonder if i overdid the excersise yesterday. I went for a walk and went to the beach to get my hand moving in the water. It was really good though and i felt great after and could move my hand with little pain. I felt wonderful yesterday and full of energy and today ive hit a brick wall.