New diagnosis RSD how to prepare for future
 

I was diagnosed 1 week ago with RSD following carpel tunnel surgery. What do I need to do to prepare for this. Started putting stuff in different boxes for my kids incase I cant later. As far as now haven't done a lot of activity. I have written letters to my kids and husband in case I can't later. May have over done it today. As of now my right hand is stuff when I wake in the morning. After exercising it I am good for the day. I have been to PT about 4 times to learn exercises I do them about 3 times a day. My calfs hurt and my feet burn but other than that no other symptoms. My muscles are very tight all over. No bad pain yet but from what I have read it will come. Please I am so scared.

Hi murgir :)

I'm so sorry you have this to del with, but there are some very important things you need to start believing straight away :winky: I know this is a scary time, and you are dreading the future, but honestly it doesn't have to mean the end of too much.

This is not the end. You don't have to start anticipating dreadful things around every corner. Remember that most online forums are weighted in favour of those who are struggling with spread or other complications - there are plenty of CRPS sufferers who are living their lives, working, holidaying and having fun much like before. They don't have the same need to be part of a forum. Yes the pain sucks, but it is not always debilitating, and it doesn't always get worse. Spread can happen, but again it's not a definite.

You have to stay positive and hopeful. Don't go looking for more trouble than you already have! Thinking positive and making plans for ordinary things will keep you involved in life and will actively help you deal with your pain. Staying in, being scared and worried will just stress you out - and stress is a bad idea. Avoid it wherever you can :winky:

The worst thing you can do with CRPS is to 'guard' any affected area. It's vital that you use it as normally as possible keep it moving, keep using it - the CRPS adage is 'use it or lose it' and it's very very true. Don't just do your exercises - keep things moving gently as much as you can.

Epsom salts are great little things :) Get some unperfumed ones from the chemist and use a few tablespoons in a warm bath, or wrap some in a damp cloth and put it on your skin when it burns. It's honestly well worth a try.

I know it sounds weird, but get started with some relaxation exercises like deep breathing ones, and meditation, they help to relax you and your body, and it really helps with pain. Don't underestimate the power of your brain to help you when it is feeling happier :p You can download tracks from iTunes or get some online. I use the Mindfulness ones. I also do some general exercises called Qi Gong that are gentle, but work on core strength and stretching. They help to keep things moving - if you stop exercising, it doesn't take long for all sorts of muscles to get very weak and then you are open to other problems.

I'd also advise you to watch your diet - it's easy to eat rubbish when you're feeling low and hopeless (I did it lol), but piling on the pounds is always bad, and meds can help with that too :rolleyes: Eating healthily gives your body the best chance to fight against problems, and will help your digestion too - which seems to be particularly under attack when you are on meds... Try to limit junk food, processed food and sugars, caffeine and saturated fat. Veg, fruit and whole grains, olive oil, oily fish, nuts, etc are all good and rich in the vitamins and minerals your body needs. It all helps to make you feel a bit better.

One of the hardest and best things to get is a decent primary care doctor :rolleyes: who is willing to come with you on this journey and help you as much as they can. Go by your gut instinct, and if you feel your doc isnt right then consider trying to find another one. You also need a pain management specialist - to be honest meds can only do so much, but they have lots of things that can help. Try to find one with some experience of CRPS... Don't be afraid to ask to see a psychologist if you are feeling depressed regularly. It's common to need to talk to someone about all the feelings that leap on you when you're given this diagnosis.

Stay away from ice under any circumstances, as it's really bad for CRPS. Avoid extremes of temperatures, and instead of giving the things you enjoyed up, try adapting them to suit what you can do, or finding alternatives that still keep you social and fulfilled. It's easy for your social life to shrink right down (been there, done that, it's no fun at all) and being solitary and in pain is not good for the soul!!

Really really good luck. Keep posting and let us know how you get on. There are loads of lovely folk here who have some fab advice and tips, and we are good listeners :D

Bram.

Thank you. I honestly haven't given up just would rather be somewhat prepared incase it gets worse quick. If it doesn't get any worse than now I will be the happiest person on earth. My hand is not as swollen or purple as it was 2-3 week ago and not sweating as much,which I hope is a good sign. I have started doing more now that I can. I am going to start walking on treadmill tomorrow.I really need to de-clutter and working full time doesn't enable me to do much. I am off work for now. Thank you for telling me it may not get any worse ,I really needed that you have definitely given me new hope. I am going
start acting like I have never been given this diagnosis. Everything you read in general as a definition of the disease is dooms day. Thanks again

Welcome to the forum; sorry for the circumstances!

I remember so well my diagnosis in 2009. The one issue with reading a lot about it is that it can kind of paralyze you. Education is a very good thing, but you have to remember to keep a sort of perspective. Sometimes a break from the internet information is not a bad thing.

The one thing that is evident about CRPS is that everybody is unique. Sure, many of us share similar symptoms, emotions, etc. But you are in charge of your own destiny.

It took me about a year to get a solid diagnosis, another year to figure out how to best handle it, and another year to reap the benefits of how to dial it all in. I'm not saying this is the case for all, but it has been my personal journey. Everyone is different.

I will tell you that things CAN get better. I am doing better in 2013 than I was in 2008 when I first contracted CRPS as a complication of multiple foot surgeries.

Is my CRPS actually better? It's still there to be sure and probably is not technically better, but I have learned how to MANAGE IT and I have had some success in taming it and that is making all the difference. And so my life is certainly changed, but it is better now than it once was 5 years ago.

Bram really summed it up very well as she has a knack for but I'll echo the sentiment of finding a number of professionals to help you along the way.
CRPS is always handled better using a "multi-disciplinary" strategy, a team approach.... meaning you'll need a primary doctor who leads the way, help in physical therapy, pain management, etc. It's up to you to determine and decide what disciplines you need. This condition is widely misunderstood even among professionals. Ask them point blank how much experience they have with CRPS. If they ask you what CRPS is, move on quickly.

I use a podiatrist (who is my primary CRPS doctor), a general practitioner who handles other medical issues, a chiropractor, physical therapist and on occasion a massage therapist. As for medications, experimentation with different meds is almost always needed. What works for one may or may NOT work for the next. Not only do you need to try different meds, you need to titrate dosage up and down until you find the "sweet spot" that helps you without taking too much of the medication.

It's a journey. But we're here to help you along the way. It's quite a community here. I've learned a lot and been helped a lot. It goes both ways.

Stay the course and keep us updated. And happy holidays. Don't forget to live your life; don't let CRPS define you.....:Wave-Hello:

Thank You.Right now both feet are freezing, bilateral calf tightness but at lease no pain. Have not had severe pain. I have thought about getting a message, never had one but my whole body is tight. They could probably spend an hour on one area!!!! I can tell my BP is up. I am seeing a neurologist. My ortho surgeon put me on 300mg of Neurontin daily and said... do not look this up...will just scare you and its really not as bad as they say. Asked if I wanted PT (I had never heard if it...RSD) and I said sure if it will help then said just take one pills 3 times a day and come back to see me in a month. I decided to go to a neurologist he is increasing it over the next 3 weeks to 900mg. I have only had slight pain. Not sure why it was bumped up. I just said I had a little pain. He is very smart but did not explain why he increased it. I will ask when I go back. If my BP is not down next week will have to go see my MD. I will also lose my job if not back to work by Dec 27th.
I had carpel tunnel on the right

What symptoms are you experiencing other than temperature regulation dysfunction?

Because docs realize how urgent it is to get an early diagnosis, sometimes they jump the gun...

If you do have it, you have a good chance for remission if they treat you quickly and aggressively.

Hi again murgir :)

How are you feeling today? Hope that tightness is down a bit... Birchlake had some very good advice, and I'd completely forgotten about the massage bit lol!!!

I do self-massage because I can't really afford to go to one regularly, but it does still help a lot. It has improved my skin, suppleness and the tightness in my legs. At one point I was starting definite contractures (where your muscles and tendons tighten up), but because a good PT told me what it was I was able to tackle it before it got too much worse.

If you go for a massage (pro ones are lovely :p) then just make sure you advise them that you have a condition causing you pain, and that touch can be very painful. Ask them to start very gently, and then you can tell them if they can go a bit firmer. Also, make sure the oil they use is natural and only has essential oils in it. Some stuff out there can cause a rash or other aggravation, and we really don't need that!!

I have roughly an hour nearly every morning (if I can) that is just for me. I start by putting on some calming music and stretching out my muscles gently, and then I do a series of Qi Gong exercises and/or "Exercises for those confined to bed" (from a diabetes site lol, excellent for rough days). Then I get out my Monoi miracle oil from the Body Shop and massage each limb in turn, including my hands and feet. All of me smells lovely then :). Then I settle myself comfortably and do about 20 minutes of meditation, normally the 'Mindfulness Body Scan'. It always leaving me feeling relaxed and in control. At least for a few minutes lol! :D

I'm not saying my method is the best or anything, but try to find something you can do for yourself every day that has a calming effect and does you good too. This disease can sometimes make us feel that we are riding an uncontrollable whirlwind, especially when we try to do normal things and keep going like we always have... Relaxing your body and easing stress can do more for pain control than many meds :rolleyes: I don't take much in the way of meds because of my work (I need my brain sharp!) and I think my hour saves my bacon on a regular basis. It doesn't stop the pain, but it lessens its impact and I cope better.

Anyway, lol, sorry for the wordiness! Have a good day.

Bram.

Hi Murgir

You have already gotten some really good advice here and I don't have much to add. It is nearly one year since I developed CRPS following surgery to repair torn cartilage in my wrist. It is a really scary diagnosis, especially since there is so little known about it. But I am doing okay. Yes, things have changed a bit. I have pain but the pain is less intense now than when I first developed CRPS and I am more used to it. I am still able to work.

Remember that we are all different. They symptoms will vary from person to person and across time. Try to keep moving as much as you reasonably can and try not to stress. Try to keep doing the things you enjoy even if you have to make some adjustments to the way you do them.

I like to use heat packs to help with my pain. I have a few microwaveable ones and I actually need to buy some more because I have used them so much they are pretty worn out. I keep on in my desk at work too. I know you don't have much pain but I also use a heat pack before and after I do physio exercises. I find that if I warm my hand, wrist and shoulder up a bit before my exercise, then I am able to do a bit more.

I hope you are feeling okay today. :)

Kim

Hi & Welcome,
Sorry you have to be in our company with RSD/CRPS.
As usual Bram is right and so very understanding! I'll add
a bit too. Again, like she said it may not get too bad & everyone's different.
If you can get a good "team" of Dr.s who can talk to each other.
I think my biggest help has come from a great Physical Therapist and a
Pain Management Dr. FIND ONE WHO KNOWS RSD/CRPS!
Even just a couple of visits with a P.T. who is very familiar with this is
worth it. They will help you with correct types of exercises that are just up
to your pain threshold but not beyond it.
500 MG. of Vitamin C daily is supposed help prevent spread.
Don't give up and keep moving gently all you can.

HI, I'm so glad you found this group. I forgot that I had signed up with this site and came back a couple weeks ago. It really helps to have others to talk to.

So so so sorry that this happened to you. It's great that you think of things ahead of time. After a while you will notice specific things that you need to do ahead of time. It might feel a little chaotic at first because you're not sure what to do but it WILL get easier.

For me, prevention is huge. I know what actions causes the most pain so I try to avoid them as much as I can. After a while you will know what your hand/arm can tolerate and what to avoid.

I have RSD in my right leg, foot, butt so I avoid everything. I have to lay down in bed all day. But if that's what I have to do to keep the pain somewhat under control.......I'll do it.

I hope you feel better really soon!
Heather

It started with my hand being stiff, purplish, scar area sore ,swollen, sweating, nails grew very quick. It was my time to go back to work and too much pain when trying to use at that point. (6 weeks after surgery)

Thank you all so much. I said some brave things yesterday (bad mistake) I was going act like I don't have this!!!! Was short lived. Couldn't sleep last night. Woke about 3 and realized, I fell asleep before taking my neurontin so I took it couldn't go back to sleep. I readjusted my times today. My arm does have more pain today. My calves have been tight and sore for 2 weeks. Last night I had a slight burning sensation nearly over my entire right side including face!!!!! My feet froze while up watching tv , so today I ordered a massager and booties you can warm in the microwave. Thank you all so much. My husband still acts like I am the same as I was before the surgery. He is so spoiled. I did the spoiling so there are gonna be a lot of struggles there too.

Hi murgir :)

Everyone takes a while to get their head around this :rolleyes: and find a plan and meds and activity level etc that suits them. You'll get there, don't beat yourself up about it!

We all have struggles about the rejigging of roles that happens. My husband has been great and very supportive, but we still have had a lot of issues around the fact that I was the leader of our little herd :winky: like most gals, and he supported me. When I got this my first year was a wash-out and he had to take on a lot, bless him, and we both found it very hard. I'm into my third year and we are finally seeing a counsellor about it all, and it's the best thing we've ever done - I honestly wish we'd done it at the start. Not a psychologist through the hospital, but a counsellor - friendly and warm and someone to talk to who doesn't have any agenda... I'm very lucky that mine has experience of chronic pain illness, and she's really helped us both. I see her mostly, but my husband has also had a few sessions, and it's been amazing at opening his eyes to the effect this has on ALL of us. We can't afford it, but it is seriously money well spent :) Do it if you possibly can!!

Try not to worry about random feelings of stabby pains, burning heat or prickles etc in other areas - I've had a lot of this at odd times, and it hasn't been spread. The CRPS is affecting our nerves, and nerves are all connected. It also affects the part of our brain where pain and sensation are processed, and sometimes there's a little short-circuit effect... It's not fun, but you have to try not to panic. If it becomes very regular (every day) for weeks and in exactly the same area, then yes it could be spread, but otherwise it's likely just the CRPS playing its own sick brand of games...

Take care and have a good day. At this early stage of things, it might be helpful to keep a pain diary (or CRPS diary lol) - for each day, record your pain levels out of 10 in the morning, afternoon and evening, and note down any particular pains/sensations you have. Also note any activities you do like exercise, going out, housework, etc. It's a very useful tool for docs (they love it - major brownie points :D) and it's great for you because you can spot patterns of things that cause a flare in pain etc. A pain diary also gives you something productive to focus on at regular intervals through the day, and a feeling of control. Both very important IMHO lol.

Don't forget to have some fun, even if it's just watching a funny show or laughing at your pets/kids being daft :p Hope you have a better day.

Bram.

Thank You so much. I think that is a great ideal about keeping an activity/pain journal. Thank you so much for responding. Love this group already

Hi New Friend, Just got back to this site. Have been away for a few months.
I am in my 22 nd year battleing R.S.D.
To remember it at the begging stages I called it Real S---- Disease. As years have passed I have changed that to Real Special Disease, as a positive, calm attitude prolongs life when dealing with any problem. This is a special one I am here to tell ya.
Education and preperation are good keys. All the advice handed you so far is wonderful. And thank God fpr sites such as this one, I was so in the Dark 22 years back. So was the medical system. Not hat they can fix yu, but every now and then you will run across a caring, knowledgeable sympathetic doctor that can make your days a little easier.
Personally I turned to alternative treatment about 5 years into this. Had lost the use of my legs, right one afflicted greater with the original injury of an ankle sprain.
One important issue for me was to share with family and friends and to try and educate them on this new lifestyle. Make them know you are different and need different handeling.
Oh the Bad days, Just Leave me alone...I need to suffer in silence. That was a battle in itself, as they took for granted that they are helping or want to at least, but...
I would be happy to chat again, have to get some dinner now. Will keep you and all in prayer. Welcome and keep your whits about you and educate yourself. I am very much in favor of a new electrical therapy called Catmare. A scamble of nerve reflex's electrically.
Talk again? Peace & LUV, Andrea

Love the name ....... It fits. I am so new to this it will help me remember the initials.... I you go into remission do you get the use of your legs again. I am so afraid of losing my right hand. Evidently that's expected. I am right handed. I love (at 54) to play the Nintendo DS. Just got my new Zelda game and I am afraid to play it due to over working it. I told my son just to take it home with him, that I didn't want to look at, he but he said no you may get better and want to play it. I exercise it but you have to punch the button a lot to play it You made my day with the name. Keep in touch and I will also pray for you as well as a cure.

Welcome... sorry to hear you are joining us with this monster!

I have been diagnosed about 1 1/2 years. Probably actually had it for at least 2 years or more after multiple surgeries on my arm for median nerve entrapment at the elbow and wrist. I believe mine is spreading to my feet ( my doctor believes it is other disorders)

I get a lot of muscle tightness and cramping. I have a massage chair (was expensive, but worth it). It helps quite a bit. It reclines to zero gravity and has leg and foot massage too. The brand is human touch. I'm also on Valium for both the anxiety this damn RSD causes and as a muscle relaxer. In addition to that I am on Flexeril at night.

Right now I have a decent drug combination going that seems to be keeping things manageable. Of course I still have flares like today the pain is horrible!

What I have found the hardest is finding the balance of not over doing it and causing more pain.

Glad you found this site.

Very true fbodgirl :)

OMG I want one of those chairs!!!!! Do you think it might be inappropriate to ask my poor beleaguered husband for one as a Christmas present lol? :winky:

Bram.