RSD spread and med changes
 

Hello all! In the past several weeks, my RSD has spread quickly to the bottoms of my feet (it had just been on the tops) and now my palms as well. My feet literally feel like someone has hammered them a hundred times and then lit them on fire. They ache and burn all the time and it is VERY painful to walk. I wear cushy slippers around the house which is the only way I can walk in the first place. First, does anyone have any feedback as to whether that is smart in the long run (to cushion my feet that is) or is it exacerbating the sensitivity??

Second, my palms have recently started burning and changing colors. I think the RSD is just getting started in them......it only feels like I have a bad chemical burn and they turn bright red or splotchy when I try to hold something. They are sensitive to any temperature of water and turn colors when I get them wet as well.

Ok....I just got back from my Pain Doc. He has scheduled me an epidural block (instead of the sympathetic nerve blocks I got a month ago) to try to reach both feet at the same time (where the worst of my pain is). He also took me off of Seroquel for sleep (which I am nervous about because it is the ONLY thing that I've found that makes me sleep) and gave me Amitriptyline to take at night instead. He also took me off of Lyrica and has given me Cymbalta instead. Can anyone give me feedback on these drugs??

I have only had RSD for 2 1/2 months. It is spreading so quickly.....I am scared to death. I just want it to STOP. My hands are cramping as I type this. Any feedback would be much appreciated. Thanks in advance for replying!

Hi MomInPain,

I am SO sorry to hear that your RSD has spread and really hope you get some much-needed pain relief real soon!!:hug: Please know that we are all here for you and will try and help you in anyway we possibly can! I DO understand what you are going through ... my RSD started in my foot and then spread to my knee in less than a month and then spread to my arm about 3 months later and I was REALLY scared and just didn't know what to do!!

The best advice I could give you is to try and move your RSD limbs as much as possible! I KNOW it hurts a lot but that will probably help you the most in the long-run and will hopefully allow you to keep normal function! I can't move my RSD leg at all as I have Dystonia which is a severe complication of the RSD and I would hate to see you having to deal with that through no fault of your own!!! Start off by doing some gently exercises and make sure you keep touching the affected limb and then gradually build the exercises up as and when you are able to!! Do you have Physical Therapy?? If so, they could possibly help you and give you some exercises that may help. I have had PT since a week after I developed RSD (although it took 4 and a half months for me to get diagnosed) and it has helped me a little - the pain is unchanged BUT I am now able to walk short distances where I wasn't able to before!!

As for cushoning your RSD leg, i'm not sure if that would affect the hypersenstivity. I couldn't wear a shoe at all when I developed RSD because the pain was sooo bad but when I went onto the Intense Physical Therapy Program, they MADE me wear a shoe and sock 24/7 to try and get rid of the allodynia. The hypersenstivity still hasn't gone completely and my foot is extremely sensitive near the arch of my foot but it is a little better than it was. I was told by my PT's to make sure I keep touching my foot as I was in pain all the time whether I was sat down doing nothing or touching it so I may as well do something and it made a lot of sense to me ... it was extremely painful and I felt like giving up a few times but I do feel it helped me a little! I think, if possible, it would be best for you to touch your affected limbs as much as possible to try and at least stop the allodynia from getting any worse.

I really hope that the med change helps you. I have been on Amitriptyline before and I didn't respond very well to it at all - my pupils went extremely dilated and I fell and it caused the RSD to spread but everyone is different and hopefully it will help you and give you some much-needed pain relief!! I hope the epidural helps you also, I have read lots of positive stories about them and I have had a Ketamine epidural and it took my pain from an 8 and a half to a 5 even though it only lasted about 6 hours!!

I'm thinking about you and please try not to panic too much - I know it is hard because I have been there and still feel like it a lot now but stress will only make your symptoms worse!!:hug:

Thanks for the update and please let us know how you get on with the meds and epidural when you can!!

Thanks Ali!! You're right.....it IS so hard not to panic when you feel so out of control of your body. I have SO much stress in my life right now......I just got a call that my sister-in-law is in the hospital and my husband is out of town. Neither my husband nor I can get to her today. That's just TODAY'S stress!!

I DO need to remember that the pain I'm feeling in my feet is not from an injury (they're not literally on fire.....they just FEEL that way).....it is my nerves misfiring and my brain TELLING them that they hurt. It is so hard when they hurt so badly to keep going. I DO still walk......I HAVE to.......four kids and a house to take care of. It is just so painful. Everything hurts.

I am not currently in PT. I can't get myself there and my Pain Doc wouldn't write a script for me to get in home care and PT. So.....it will just have to wait. The only "exercise" I get is walking around cleaning my house and climbing stairs (and it's big.....a LOT to do).

I am desperate for pain relief which is the only reason I would agree to TWO med changes at once. I am SO sensitive to meds and med changes. I can already feel the Cymbalta (I just took my first one 2 hours ago)......I'm getting nauseous and a little dizzy. This is going to be a rough few weeks for me.

Thank you always for your wisdom and maturity, Ali!! You are such a sweetie. I am sure your parents are SO proud of you!! You have so much to offer the world. I am happy to know you!!! Thanks again!!

Prefacing it with the mantra that all meds don't work for all people, I did have some experience with Cymbalta. After taking it for a week of or, I developed double vision. Not the cute kind, the "I literally have a 50% chance of touching the right thing" kind. I also didn't get any relief, but that may have more to do with my short time on it. I've never been on Ami, but it is a very well-tested and tried treatment for chronic pain of all kinds and likely will help you with sleep as well as Seroquel. Ami is a tricyclic antidepressant by class, so you will want to read up on the interactions and the importance of not taking too much (accidental overdoses are a fatal thing.) That said, Ami has been used for migraine pain, nerve pain, fibromyalgia pain, you name it and has proven to be pretty effective. Make friends with your Pharmacist and he will likely give you a good print out on what OTC drugs and things to avoid when taking tricyclics.
Remember, though it's easier said than done, stress increases our symptoms. View the med changes as a positive step towards controlling your symptoms. It's hell to feel like your body is on a roller coaster that your brain didn't choose to ride.
Best of luck,
Lori Lee;)

Hi Mom.. :)

I am so sorry it has spread to your palms as well as the bottoms of your feet. Yes indeed keep on walking as much as you can, as dear Ali said..There is such wisdom in her words.. She is truly amazing!

I know it's hard but it is much harder being like me and not able to walk except for hobbling with a walker.. I am so stiff now.. Try to walk as often as you can. :hug:

I am on Amitriptyline also at bedtime and it has made a difference for me. I go to sleep faster and stay asleep longer than I have been doing.. Plus it has relieved my pain a lot more than Neurontin has.. It helped my Fibromyalgia in the past also..I hope this helps to relieve your pain also..

My RSD has spread all the way up my left leg and has spread to my right leg.. I do know what you are going through and it is very scary.. I sympathize with you more than you know..

I go to PT today.. Amy, Laura, Susan and Steph have been such a help to me and my swelling is reducing a litle bit at a time..

My therapists gave me a therapressure brush to use to desensitize my feet and legs.. It has helped a lot.. Things touching me don't bother me anymore.. Bumps in my wheelchair bother me a lot still.. This old house is like an obstacle course and bumps around every corner..

I walked 30 feet with my walker the other day.. There is hope,
we just have to keep on fighting...

Hugs to you dear...

Pauliana

I am not so sure that epidurals make much sense for bilateral pain on the soles of your feet. Unless you have a central disc herniation or other compressive disorder previously diagnosed by MRI or the like. While the sympathetic nervous system does have input from the spinal nerves, the plexus lies outside the spine and would not be directly affected by an epidural. I would think that a sympathetic block would be a more direct approach if the pain is felt to be sympathetically mediated. Otherwise, metabolic and peripheral neuropathy issues are also a concern, I would think.

Just my humble opinion....

I actually appreciate your humble opinion, Dubious. How in the world do I approach this with my Pain Doc??? Should I call him and ask him to give me sympathetic blocks instead?? He'll only do one side at a time with those blocks. I just want the PAIN to go away. I took a Vicodin earlier (which I NEVER do) that I can tell is wearing off and I am on FIRE. Oh.....this pain is the worst I've ever experienced since my RSD began. What should I do????

mom
i am so sorry that your rsd is spreading. like you mine spread very fast it took 5 mths to be in both arms from shoulder down and both legs hips to toes. but at the time had no treatment . i really hope that the block works :grouphug: to you and hang in there any time you want to talk i am here

med question cymbalta is an antidepressent they put me on but due to my kidney problems i had to go off becuase it was causing me to have infections. the lyrica i was on for over two years and them it started messing with my blood pressure i liked tho it had very little side effects besides the BP thing.
the amitripaline i have taken when i first got a RSD doc and i broke out in hives . so i am not any help on that side

on to the blocks. like you mine wont do blocks for both sides at the same time either . i do lumbar blocks for the leg pain also this might helps also it depends on how they do the block and what meds your doc uses as every PM uses differnt techniques.

i hope that they can stop the spread or slow it down thats for i am so sorry that it is spreading. but like ali said keep moving no matter how much it hurts that is how i keep my limbs from freezing it is very hard and painful but if i stop useing them then they start to claw up

-carrie

Hi Dubious,
Thanks so much for writing. No, I've never had an epidural injection for this type of pain.....just a steroid epidural years ago for back pain that actually caused sciatica (also, I had an allergic reaction to the steroid. There were supposed to be a series of three injections and they quit after two). I will call the office tomorrow and see if I can ask the nurse or set up another appointment to see him before Monday to ask these questions. I never would have questioned it......I just want the pain to go away as quickly as possible. I can barely function as it is. I am SICK so far from the Cymbalta (just started this morning) and the pain pills. I certainly hope I adjust to the meds quickly (as I sit here munching on dry Cheerios....the only thing I can THINK of keeping down right now). Anyway, thanks so much for caring and writing me back. I'll keep you posted on what I find out!

Hi Mom--

I'm really sorry for your spread. I've had no problem with the Cymbalta, in fact I've felt a lot better since going on it and I sincerely hope you do, too. It's an antidepressant and I think it's helped me with that as well as the neuro pain. I also switched from Neurontin to Topamax, I think I might burn more but overall I don't feel all that much worse off. Could be that the snow has finally melted, I'm not sure...

Keep moving. And take some really hot showers. Persist in trying to get PT in your home. Maybe if you show up with a bunch of kids running around often enough they will give you home therapy! Keep on your PM docs for answers to the questions that other people on the board gave you for the blocks. Just stay motivated and stay in the fight, don't give up!

XOXOX Sandy

Hi Carrie! Thanks for writing me back. WOW.....our RSD sounds SO similar. It astounds me how this disease can spread SO quickly. I, too, hope they can get control over it and just stop it from going any further. Less than a week ago, I noticed the color changes in my hands, a few days later, the prickling feeling, and now the BURNING on my palms. When I hold something lightly, it leaves marks that look like I have put my fingers or palms down on a hot skillet and have severe burns. How this can all happen while my hands feel COLD to the touch (although sometimes hot and sweaty) is a mystery.

I had maybe 5 lumbar sympathetic's 1 1/2 months ago that HAD to help. I was in NO WHERE the amount of pain I'm in now. The pain in my feet has slowly crept back since my last one.....I am so deeply sorry for every one of you who experiences this. This disease is just wretched. It is terrible waking up every day wondering how much worse it's going to get THAT day. I think I am developing allodynia behind my knees, too. Does anyone have it there??? It aches just to lay in bed and have it touch the sheets.

What breaks my heart is that I have finally gotten to the point where I cannot hide my pain from my kids anymore. I have tried before now to "grin and bear it" and I am beyond that now. They see their Mom barely able to walk. My 5 year old daughter was crying today saying, "I don't think you're ever going to get better, Mommy". She was afraid I would leave her if I got worse. I promised her that no matter how badly I ever hurt, that I would NEVER leave her or Daddy or brothers. It just grieves me so much that SHE has to deal with this. I am an adult.....she is just a little girl. SHE should not have to deal with MY pain. Uggggghhhhh......

So, thank you Carrie......I know you have little ones too and understand how I feel. I do and WILL keep moving for them....no matter HOW badly it hurts. I'm going to start my own PT here until I can afford to get professional PT's. It's just all......too much right now. Thanks again for writing me back!! You're such a sweetie and are SUCH a blessing to this forum!!!

Hi Sandy!!! You actually brought up a question I may post separately. Do you turn colors in the shower??? ALL of my RSD areas turn blue/purple/red and swell in the shower. Once I start cooling off a little, I get mottled. I try not to make the temperature too hot or too cold......it HURTS for the water to touch the RSD.......but does anyone else get the color changes in water??? Every time I wash my hands they turn blue or red or mottled. It doesn't matter what the temperature is.

I LOVE your idea about showing up with a bunch of kids!!! My daughter would think it was an indoor playground and start throwing the big balls around!! I may make an appointment to see my GP. He may be willing to write the script for it. I do genuinely NEED it right now. My hubby MAY be about to start a job (much needed) but that would cause him to be gone a lot. I do not know how I would function. ANY doctors appointment exhausts me just from the effort of getting ready and GOING. I'm too tired to do much else for the rest of the day.

Yes, I will call his office tomorrow. Thanks for all the good advice!! I look forward to hearing of anyone else on Elavil or Cymbalta and how they managed on it!! Thanks again!!!

Hi Mom,

I am so sorry that you are suffering so much both physically and emotionally.

I just wanted to share my daughter Sarah's experience with an epidural. She was diagnosed with RSD in her ankle within 10 days of a sprain. Soon after she was referred to a pediatric aniesthesiologist who immediately put her in the hospital for a week-long epidural. During the process she did not realize pain relief; but within a few days of coming home her ankle pain stopped. On her first day back at school, she tweaked her ankle and the pain returned. At that point her doc followed up with a spinal nerve block and the pain again resolved.

In retrospect, if we had it all to do over again, I would have been more concerned about all the meds she was given. She was prescribed many of the typical meds in addition to antibiotics for a staph infection she developed from the epidural. When I asked if it was o.k. to be taking so much, the reply I received was, "yes, if her stomach holds up." Sadly, it didn't ... and within a few months she was diagnosed with RSD in her stomach. I know that you are trying very hard to be cautious about medications, using them only when you absolutely need to. I wanted to share this as it was in fact too many meds that we should have been most concerned about.

I will keep you in my prayers.

Jeanne

Exercise
 

When you finally do get to some Occupational Therapy or Physical Therapy, be sure to say exactly that. They can have a ton of ideas on how to exercise while doing housework, along with reminders of the "right" and "wrong" way to do things. (For example, lift heavy objects with your knees, not your back.)

When a PT is doing this, though she/he can tailor everyday tasks to your particular condition. I once saw a therapist demonstrate how to pick up toys to someone with both a bad back and two bad knees, while getting some beneficial muscle movement at the same time.

If you are given a decent set of PT exercises, you may not need to have a lot of trips to the clinic or hospital. If you are a good learner, you can do much of your PT at home by yourself. A PT appointment once and a while to check things out might be all that is needed.

Take Care,

Mike