recently new to rsd. year old..
 

i got rsd in left fingers up to shoulder and into right shoulder... i havent ever had any pain relieve.. my doc says he can no longer help me since the blocks dont work for me..can anyone give me any ideas? im so despertly hurting all the time.. have tens unit and it makes it burn more.. heat is too much.. and cold is even worse... im slowly starting to lose the right arm as well.. im really starting to get scared..

I've had RSD for 9 years.

I use pain meds and my Goldilocks method (jenough use of my effected limb to thwart atrophy, while not using it at all when my pain level starts elevating).

Lidocaine Patches are pure heaven for me in an emergency, but the catch is if you use them too often, they stop working. I never use them unless my base line pain hits a 7-8 level for me. I always use them for car trips more than 15 miles or so, and always flying! My right hand is the center for my pain, but for the last 3 years or so I've started slapping a patch on any part of my body I have the beginnings of new, serious, and unusual pain with and it seems to calm potentially new areas down.

Hyperbaric Therapy worked well for swelling I didn't even realize I had (swelling was hiding how extensive my atrophy is) but it is too expensive for me to keep up right now. I did 25 sessions @ $175 a pop. It actually got rid of the pain in my ankle that I had for years that was like a light case of RSD compared to my hand. If you can afford it, I would try it. If it had really seriously decreased the pain level in my hand I would have mortgaged my soul for more treatment...

As for Aquatic Therapy, I have a dilema, our local pool is far enough of a drive to increase my pain that unless I move (a serious consideration), my Goldilocks method says it's a wash. I will say I get SERIOUS relief from warm ocean water, like I'm a normal human again relief. Has anyone else experienced this???

I bought a used Mercedes, to replace, well actually another really old Mercedes that still worked perfectly (my son's luck) because the vibrations from the older car (that no one else could feel, of course) increased my pain base line signifigantly more the newer (also used :confused:) model. I discovered this while my brother drove me in his car. I have to say hands free locks, and the big ignition key help as well. These seem like such small things...

The last of my oddball tips is I've had major, shall I say, plumbing problems from my pain meds. Nothing prescribed worked for very long, and some caused fun, new problems. After starting to eat 1-2 organic apples a day the, cough, problem is gonzo!

Dr. Macnamara at Mayo in Rochester has said a few this as in options to me about my RSD in my left foot. I also have had nerve blocks. They only last a few months for me. Hope that helps.

Funny...LOL :) I'm the same way..

RSD "Lifesavers"
 

This is a great question that all of us, even those of us who have lived with this illness for years, will benefit from reading the responses of others. Thank you for asking! As a mom, wife, friend, and Dr. Doolittle to two rescue dogs and four cats, here's my list:

1. Flannel nightgowns year-round, Lanz for winter and Macy's light-weight for summer.

2. Flannel pillowcases, sheets and duvet covers for down pillows and comforters, year-round.

3. Honeywell tower fans, one for each side of the bedroom, year-round, to help with temperature adjustment when you have flares.

4. Born shoes, available from Shoeline.com. Their cushioned sole has the best shock absorption for foot/leg RSD and their shoes last for YEARS.

5. Jeans bought one size too large so that the legs do not aggravate the skin. I have the tailor simply take in the waist. They look cute and are skin-friendly.

6. Forever 21 long-sleeved cardigan sweaters from Forever21.com or stores. They are soft, adorable, and a bargain @ $24. Even on the days you feel the worst, you will have something happy and RSD-friendly to wear.

7. Make-up bag with handles large enough to hold all medications to keep on nightstand. Allows access to meds without leaving bed when walking is difficult and ensures you will not forget to take a required dose. Also makes it easy to take meds if leaving the house for an extended period of time.

8. Tiny purse only big enough for cell phone, keys, credit card, & money to put inside larger purse that holds additional items. Anytime you leave your car, only carry tiny purse to minimize stress on RSD impacted extremity. Leave the larger purse inside the car with the additional items inside available if you need them. This will make an impact on your pain level.

9. Bath & Body Works sleep socks. They're double thickness with non-skid soles, guaranteed to sooth our RSD skin. Look for them during the holiday season.

10. Simply Shabby Chic blanket from Target. Simply the softest blanket ever made for anyone with RSD. Comes in white, pink or sage green.

Those are my Top Ten after seven years of living with RSD. I hope these help and look forward to reading the hints from others.

good luck and God bless!
 

There are lots of suggestions here on everything from nutrition and supplements to different infusions and implants. things that work for some people may not help others as much and it's a lot of information to consider.

I needed someone I could talk with about treatment options and evaluating them. when I got the advice to see a pain psychologist I was offended, hurt and confused about why my dr would send me. mine helps me deal with my fear and pain. I talk with him about treatment options and although he can't provide medical advice,when I hear about anything, he helps me talk through whether i can be comfortable trying treatment ideas. he also helps me keep track of patterns (good days/bad days and what may help or hurt) we come up with plans for how to get through things like short outings.

I hope this helps and that some of the suggestions here work very well for you!

Has anyone mentioned chocolate? Chocolate, lots of chocolate! Lisa

so sorry for the pain you have
 

Thanks for your suggestions. mine is in my arm, but the med advice helps. good luck and warm wishes!

specific ideas
 

there are pain pumps, spinal cord stimulators (controversial) and other options that another pain management dr can discuss with you. If there's another pm dr in your area, he/she may really be able to help.

question for you
 

are you essentially without spread? did you have scs or pain pump? Thanks!!

I also have issuse in my rt elbow (needs surgery, not going there), rt shoulder, neck, and back. They are generally relatively mild compared to my rt hand. I have flare ups in other areas as well, but every day, week, month, are different. Usually there is a cause attached and I'm proactive about all those little alarm bells nowadays.

I started having back spasms after travelling a few weeks ago, that I'm 95% sure was a result of my locking my arm as my pain escalated throughout the day. The Lidoderm patches did nada this time. Three trigger injections later, 7hours of massage and I'm back to baseline back pain--insignificant compared to the HAND.

I had an IV line put in my "good" hand twice in the same spot, a week apart, during a series of blocks, the pain was as severe as the right has ever been and completely freaked me out. I used Lidocaine patches nonstop for a few days and it went away. This is part of my fear of the SCS. Everytime I've been in the head space to try it, WC throws up roadblocks anyway.

I should say my while my left hand is generally pain free, it is just as hyper sensitive to cold now as the right, and with the cold there is burning pain, and the fingers stay colder than normal. Actually, there is zero chance I could tolerate an ice pack on my hands or feet at this point. Even holding a piece of cheese from the fridge in either hand causes burning pain from the cold.

It seems when my stomach gets irritated from the meds, if I don't get it under control quickly enough, fabric touching my stomach starts bothering me... I feel like an old car that needs to be constantly monitored for fear of breaking a part that will send me to the junkyard... :eek: But, then I'm thankful none of my other parts have really broken down, ya know?

My RSD is is my Rt. hand and Forearm. It had spread to my shoulder region but with sympathetic nerve blocks I no longer have any pain in my upper arm.
I was/am Rt, hand dominant.

My lifesaver kit;

This is my American express card, in other words, I NEVER leave home with out it.....my Isotoner Medical glove.

Always sweat pants or workout pants that do not have a zipper or buttons (as I can not do either)

My tennis shoes already tied, double not.

Tens unit
Medicine
Pillow (for trips)

Hah! I wear men's underwear, because for some reason, it feels better. Down pillows for sleep and travel. My RSD is in arms, hands, shoulders and now moving across my chest, so I sleep with arms wrapped around a REALLY beat-up soft down pillow. Two soft pillows under head, and make sure your shoulder is UNDER the bottom pillow. Can't stand any clothing that is tight or rough. Have a bunch of loose linen dresses for summer, which I wear with small t-shirts. Pants all have elastic waists, and I have even bought maternity pants from Old Navy because the fabric is soft, and obviously, the elastic panel is comfortable. Buy smaller than you think you are -- they run big. Wear t-shirts under anything rough -- no wool sweater feels good against skin. I also look for really soft socks -- the two pairs of hospital socks I have are the most comfortable -- too bad we can't get those.

Hi, I am new to this site. I've been diagnose with CRPS for 4 years, but I think I've had it longer. It's primary focus is my right hand, but it really starts in my right eye and ends at the bottom of my right foot. So, I have tried a few 'fashion statements' for helping this disorder, too, and I appreciate this question. There are so many good ideas posted already. But, I haven't seen this one: I often wear a large scarf, like pashmini, or cotton, depending on the weather. I can't tolerate even a breeze on my arm, so I will take the scarf, use it as a shawl, and drape it over my arm, when I need extra protection, or my arm is cold. I can also 'loop' the shawl around so that I can prop my arm when it gets really tired. I have found this to be very helpful.
The other ideas mentioned are ones I use, too: TENS unit, adhesive heat pads, hot water bottles, capri yoga pants, shirts with sleeves that are not too tight or too loose, and I also layer my clothing because I can't regulate my heat, either. It is very important to move, too little or too much moving brings on more pain. I dress so I can move.
Thank you for all the good ideas that I've read.

Socks
 

We have a place in maine called the sox market and i buy mens diabetic soxs. They are loose and comfy.

K.

Hi! I recently found "dreamweight cotton" shirts at Express (buy one get one half off right now). they are super-soft cotton shirts that are really flowy. My RSD is in my chest, so they are great because the material is so soft that if it touches my skin, i don't want to cry quite as badly...but it doens't touch much because they move away from your body. they are great! they come in tank tops and short-sleeves. I bought 4 tops and will be going back for more soon because I love them so much!

Also, grandpa's garden inc. is a great company that sells hand/foot mitts (stick in micro and then put right on hands/feet. They also sell these great shawls that you put in the micro as well! Feels great when my whole body is cold, especially putting it into bed a few minutes before i get in...it's long...goes from my neck to my waist when I lay on it.

Hope this helps!

helpful hints from another mom in pain
 

Re: Ice as a regular treatment with CRPS
 

Just be careful about the constant use of ice. After my shoulder surgery, the only thing that would help my arm was ice packs and I used them constantly at home and while at work, round the clock becuase they were the only thing that gave me relief. From back injury rehab therapy I know that when you ice something, the cold impulses and pain impulses compete with each other when traveling to the brain up the spinal cord -so ice decreases the amt of pain felt. I thought the same applied with my pain after shoulder surgery.
I don't know if that was what triggered my CRPS or if it made it worse than it would have been without constant icing. Since then I've read that it can exacerbate CRPS or cause it. I've found that info in several places including Dr Hooshman who specializes in CRPS. I've pasted what he said and the source of the quote here.

Excerpt: Abstract. Complex regional pain syndrome (CRPS) is usually caused by a minor injury, and requires proper evaluation and multi-disciplinary treatment addressing the multifaceted pathological processes that evolve during its chronic course. Patient’s age, the nature of pathology, and mode of therapy influence the outcome of treatment. If at all possible, surgery, ice and cast applications should be avoided. There is a desperate need for research in proper management of CRPS.
http://www.rsdrx.com/Spread%20of%20CRPS.pdf

Dear Pacugirl -

Amazingly enough, I am also almost certain that icing my shoulder after my rotator cuff injury and surgeries either caused or may have significantly contributed to my RSD.....my pain was severe, and ice helped numb things up. So I used it all the time. From Nov 2006, when I was injured, through June of 2008, when I was diagnosed with RSD. I even had an ice machine that I could fill up and plug in and leave strapped on my shoulder throughout the night so I could sleep....

Ugh....if only we could turn back the wheels of time and undue things, huh??

Sandy

Some things that I have found helpful:

Soft fluffy socks with all the elastic removed and which are soaked in laundry conditioner in a sink after every couple of washes to keep them soft. We also tumble dry them to keep them fluffy. (I have had RSD for 8 years and it's very severe and full body. I can't stand anything tight, especially on my legs, arms and neck).

Silk duvet. This was really expensive. However, the silk duvet is far lighter than normal down duvets and is really warm. Although I find it almost impossible to let the duvet touch my lower legs I can let it touch my thighs whereas with a normal duvet I can't bear it at all.

Very soft fleecy blanket. This blanket is very light and was very cheap from primark. Over time I have gained quite a few of these blankets and even gave one way to a woman I met in hospital who had RSD in her leg and the blanket was the first thing she'd ever been able to bear on her leg. It is very soft and very light. I now have a range of different colours and sizes.

I have a large range of pillows and one of my favourites is made of Tempura foam and is sculpted to support my neck. I also have a body pillow. I have a lot of pillows in bed and use them for positioning so that I can lie in a fully supported position with pillows under my head, shoulders, arms, knees and feet.

Microwavable bean bags with lavender.

Splints to stretch out some of my joints - they are painful to wear but less painful than having bony contractures broken.

Pyjamas - like many of you I find pyjamas really comfortable. I tend to wear pyjamas from Primark as they're cheap, made of soft fleece and I can cut the bottoms off of the pyjama trousers. There are no cuffs on the pyjamas which makes them more comfortable and I can tolerate them better.

I find any bumps in wither my wheelchair or the car agonising and the pain often makes me pass out. I therefore wear a neck brace when I'm in my chair as if my head is kept still I'm less likely to pass out (and I have very little head control anyway). Even before I lost control of my head I used to wear either a soft neck brace or a neck cushion when travelling as I found it reduced my eye pain, headaches and back pain that normally worsen significantly whilst moving around.

Smelling salts which we can use to bring me around if my pain is too bad.

A mixture of emergency medications including rectal diazipam, oral diazipam, oramorph, oxynorm and ketamine with permission from my pain doctor to increase if the pain becomes unbearable.

Leg warmers - I sometimes wear these as my legs are almost always ice cold. My favourites are almost a metre long and bright yellow. We removed the elastic from inside the leg warmers and I wear them over my feet and up over my knees.

When it's cold I use an electric "sheet" which is like an electric blanket but instead it is a mattress overlay. It can sometimes really help.

Aqueous cream can sometimes help with the itching feeling I sometimes get, especially on my legs. Needing to itch but not being able too because of pain can be awful. I find that if we just chuck on huge handfuls of aqueous cream then it not only stops the itching but also helps keep my skin hydrated.

Ipod and book. If I'm travelling I HAVE to take something to read or listen to with me as it works as a distraction. Audiobooks are fantastic for this if you have problems holding a book.

Just some thoughts.

Love

Rosie xxxx

Lifesavers
 

TENS unit - helps break up my spasms and distract me from the pain. Also works great for crowd control and to keep people from bumping into you in crowded places! People tend to steer clear when they see tons of wires hanging off of you. :D

Lidoderm patches

Biofreeze spray and gel

A paraffin wax bath. I bought the Homedicas one from Amazon.com and absolutely love it. Helps relieve my hand and foot pain well on bad days.

A black sleep mask and lots of sunglasses so I can block sunlight and even indoor lighting when it's really bad. I get awful occipital pain and headaches which concentrate behind my left eye.

A kind, compassionate, patient and loving fiancee plus my three children. :)

Percogesic - Similar to Doan's, I found the magnesium in those pills seems to help my leg spasms and cramps alot.

Fruit2O Essentials waters - 10% RDA potassium per serving which is very helpful.

Therabeads heating pads, especially the neck wrap one. Less then 2 minutes in the microwave and they're good for 20 minutes of heat

Frequent massages (obviously not during a flare up!)

Icy-hot patches for when I can't use the Lidoderm (those are 12 hrs on, 12 off)

Lukewarm epsom salt baths

Terry crop sweat pants from Victoria's Secret. Sooo soft and cuddly except when I'm overheating, then everything gets ripped off!

Vitamins I take - Apple Cider Vinegar capsules (reduces inflammation) Robitussin capsules ( I forget why but my fiancee said they're like a poor man's ketamine, they somehow react as ketamine does in the body) Vitamin C, B- complex, extra Niacin, Glucosamine, Fish Oil, tryptophan, etc

Thanks...I never thought of using the Tens Out in public! I often get frustrated and avoid places because I am afraid I am going to get bumped or for example when I go food shopping alone. I can't lift alot because of my arm but I get looks like I am just lazy. I even had a gil ask me "why not"? when I told her I couldn't lift a case of water. She said "you look fine". Grrrrrrr.

[QUOTE=stressedout;702590]Thanks...I never thought of using the Tens Out in public! I often get frustrated and avoid places because I am afraid I am going to get bumped or for example when I go food shopping alone. I can't lift alot because of my arm but I get looks like I am just lazy. I even had a gil ask me "why not"? when I told her I couldn't lift a case of water. She said "you look fine". Grrrrrrr.[/QUOTE

I wear it in public all the time but then I'm kind of the type who never really cares what others think. The difference in how people treat you and the elbow room and personal space they give you is amazing. I was in NY yesterday for a few Dr's appt's, wore it all day and never got bumped into once. Actually, alot of people ask about it because they know people who would benefit from one. :)

lightweight socks helpful
 

I have an ultrasensitive foot as well. initially i couldn't even let the sheets touch my foot or the pain was so bad i couldn't sleep. Desensitization with many objects helped a lot as well as warm epsom salts- i wear ultra light socks by puma - low cut - they dont press hard but expand gently - i got like 6 pairs for 5 dollars on sale and then went back and got another 6 more.

rsd
 

hello my name is kim and i have rsd and i am going to have a glanglin pain shot on monday and i very concerned about this if it will help or make this worst. I have a real fear in any one doing any thing i had two surgeries my arm and both failed and now i am worried about any one doing any thing . It is my right arm i am now disable from this and need some in put on this pain method they want to do please could i have some in put . Thank u kim

hey kim

i´m not sure but i think you are talking about a ganglion shot with a local anasthetic or a permanent lysis of the nerve
i have rsd in my right foot and had a lumber block done a few month ago, i was worried because i too had two surgeries before, which provoked my rsd
but the block and the pain meds helped at least a little bit (and every little bit is worse everything)
but i think you should talk about your fears with your doc, they cant see what you feel, and you should trust him so much that you can ask him your questions
i hope i could help you at least a little bit! if you have any further questions dont hesitate to ask
:hug: leiea

**please note**
 

JUST A REMINDER...
If you are posting off topic...

Please post on the main RSD forum. Everyone is important!!! We don't want anyone to get lost or forgotten!!!

Off topic posts can get lost on this thread as this thread is not often looked at or read.




If you are replying to a thread here, and you want to make sure it gets read, you can always

1. click on quote...
2. then highlight the quoted information... right click, click on "copy"
3. Click on your browsers back button twice.
4. Click on New Thread
5. Right click in the main section... then paste.
6. Don't forget to put something in the title section... ie...attn--the person quoted.
7. After the quoted section you can write whatever you need to ask or talk about.

Thanks,
:)

Hi Kim,

Nice to meet you. The shot your refering to is called a "stellate ganglion block". I have had many in the beginning of my RSD journey. There really not a big deal as far as pain getting one goes and it is fairly quick. I know my pm doctor now's does them with ultrasound guidence, a couple of years ago when I was getting them it was without the ultra sound. I never had any bad side effects. You might get what they call a Horner syndrome which is like a droppy face but that goes away within a hour or so. You can get a world of information off the internet just put in "stellate ganglion block" and you'll get many hit's. I wish you the best and hope it brings you relieve. My RSD is also my right elbow/arm. I had a injury which required many surgeries and a titanium elbow.

Good luck and truly there's not any reason to be afraid.

gabbycakes

I am sure this has been said since I haven't read all the way through but Crocs have been my shoe of choice. The wide clog ones (fuzzy furry ones in the winter) and some sandals in the summer. shoes have been my main nemisis since this started but crocs ROCK

difficulty using your hands? great solution!
 

I have generalized RSD so i feel isolated. Using the computer to communicate is important to me but i have a difficult time typing. Well, my therapist recommended "Dragon speaking" which you download the program and using a headset you speak and it types for you!!! It is soo cool! I can answer my email now without taking forever. Look into it if you are having trouble it helps you stay connected to the world! momof4

Gotta luv technology!! Glad you found this program as I always enjoyed hearing from you.

old friends
 

what a great thread... and i hope to contribute more later... but what has absolutely saved my feet are my Old Friends slippers. i haven't worn shoes (on both feet at the same time!) in 9 years... but when i must have something covering these huge, swollen, purple blobs at the end of my legs? my size 10.5 old friends are just the thing. (i ordered several sizes up from my former pre-crps shoe size, plus the slipper/shoes are adjustable)

they are sheepskin covered with suede, open-toed -- i cannot even tolerate socks, though in the first year with crps i must have purchased several dozen different types. i could open a Sock Bank...


this attachment (if i did this right!) shows what the shoes look like:
Attachment 6272

slings
 

it just occured to me that i would also love to generate a list of things that *need* to be made! what comes to mind right now, for personal reasons, are SLINGS! i have had to be in an arm sling off and on for the last five years or so... and always end up tearing the things off. there have been times -- after a major shoulder surgery like a shoulder replacement -- when i could not tolerate the sling because of crps. the straps are awful, too tight, with too many "edges" -- if you know what i mean! there needs to be a modified, allodynia-aware design.

so if anyone out there is looking to make a better mousetrap, start with slings!

in the end, i always rigged something up from a bathrobe tie, or a soft scarf -- but as easy as those were on me, they were also not exactly what my orthopedic surgeon had in mind...

Hi, am a male who have dealt with RSD for 23 years now, since 1988, with the pain in my crotch, left buttock, back of thigh & foot. Having trouble finding anything to wear, especially underwear, where nearly nothing will touch my "privates." Now wear loose cotton boxers, have even tried womens panty hose, compression shorts, all without any relief. Anyone have an idea?

For me it's light cotton pants from Kohls. Sonoma brand...have them in every color...lol. Rolled up so they don't brush / rub my foot. I have RSD in my left thigh down to my toes.

Where are these shoes from? What brand name - they look comfy.

somewhat little more comfortable
 

i cannot wear regular socks or even the hanes socks for over 7 years i have wore soft fuzzy socks there thick warm and not tight i cant wear nothing tight! i wear sun dresses when i can short ones and alot of pajama pants bigger also and the warm fuzzy ones also hurts to wear levies even if big because of the injection i got on my right buttocks the needle went into my sciatic nerve and the medica also fried the nerve so the pockets also hurt me bad! i wear stretch pants or skirts! i have not sat ona a couch or bed or chair for over 7 years in the car lean on left side prop up with pillows and lean over my bed i have alot of soft fleece blamkets i always have one wrapped around me its in both legs now and my right buttocks is bad just lean over my bed have double pillow top matress plus comfort matress would be nice to put my whole body on there instead of hanging my legs! crutches been using since i got hurt i walked in the clinic and could not walk out from the injection direct hit to sciatic nerve and could not bend knee or toes right afterand of course still cantthe emg showed major nerve damage course gets worse but always make sure if use crutches have extra pads!! slippers i wear or the soft furry boots bigger size of course from fat feet and swelling always get extra bigger sizes cause of all the swelling bad in my buttocks to kinda deformed it!! i do have a heat blanket but alot of times cant put blankets on me when i lean over bed because of the weight so the doct said get a infa red heater for my legs keep warm and help little with blood flow! just wish i could get down like alot of people with rsd if i did not get that injection i would be able to so everyone make sure if u get a shot in ur hip make sure they measure and its in the hip not the buttocks and if hurts make them stop she did not listen to me now here i stand and cry sleep maybe 2 hours every 2 to 3 weeks ok so what does the ebsome salt do i no u can use it on cuts but confused on what u would use it for with having rsd and cprs i cant even bath or shower hurts so bad and cant get dressedwith shoes socks shaving legs so always make sure i have what i need on before my family leave! ace bandages for the knees ankles also at times eases alittle!! and the heat patches and i also use emu cream the blue kind is used for this kind of pain cheaper at walmart way cheaper bigger bottle but its generic alot of money at the phara even a little bottle!

Hi. My sisters and I created an arm support for my mom. She just had a "minor" stroke and her left arm is paralyzed. She cannot use a sling due to the edema in the collar bone area. We made a belt and used strong velcro to fasten it. A "sleeve" or "muff" was made out of material that was comfortable for her. She is able to thread the sleeve over her paralyzed arm and then velcro it to the belt. She said that it was more comfortable than it hanging down and more comfortable than it being stuck into her blouses between the buttons. She also said that she did not feel confined by it. It this interests you, reply and I can give you more details.

Thank you so much for all these ideas. Over here in the Uk there isn't much support for RSD so thank you again.

New member here, just registered. I have been living with RSD for over 10 years and in addition to the great ideas, I have also found comfort in knowing that I am not the only one who uses these aides on a daily basis. Usually all I wear is a pair of loose fitting shorts. I admit that sometimes I feel embarrassed by this, I wish my kids had a dad who came home from work every day dressed for success. Instead I worry that their perceptions are skewed because not only does their dad not work, he doesn't even get himself dressed every day. I feel sad for them for that. But keep the ideas rolling, I don't see a lot that I would add that haven't been covered though.