Hello everyone,

I need some advice please.

I have yet to find any help to manage the pain that I can only describe as deep, sharp, stabbing intense pain in the bones of my rsd foot.

I'm over the top of the charts today and my Oxycontin isn't touching the pain. I'm afraid to take too much and don't know what else to do as I don't have anything else as a backup.

Please let me know if you have been able to find any relief from this type of intense bone pain and what it was that helped you.

MsL

Perhaps hit up your pain doc for possible sympathetic block. If your pain is SMP, then a block may be very helpful.

Hi MsL,
I'm so sorry you are in this intense pain. I have had the stabbing intense pain, electrical jolts and jerks thru my body & brain. The only thing that completely took them away was high dose of neurotin and then later changed to lyrica. 3200 mg. a day of neurotin and 400 mg. of lyrica-not both at same time. the lyrica seems to help more with the pain. I was also on two anti-depressants for depression and nerve pain. I was on the high dose of neurotin for 4 years. Just a few months ago, I went slowly off the meds and just one 120mg. of cymbalta now. What has really lowered my pain level is sleeping a restorative 10 hrs. a night-300mg seroquel. When I started sleeping 10 hours every night, I was able to cut my lorazapam-anti-anxiety med from 2mg 3 times a day to 1 mg 3 times a day. An anti-anxiety med calms the sympathetic nervous system , thus lowers pain level. I also went from 6 5/500 mg vicodin to 3 5/500 a day. I'm also on two blood pressure meds. Because of the sleep, my pain level is drastically dropped. When I got the flu last month, I did have a bad flare and went back up on meds, but now am back down. I feel like I'm getting my life back, but still need to be on half amount of drugs. My Dr. just completed a 200 person trial on seroquel and the results were a high percentage of help on fibromyalgia and sleep. When it is published, I'll post it on the board. I've had RSD 14 years, now full body and internal. This has been a gift. I've been seeing this Dr. 5 years and feel I'm in a better place than I was a year ago. I follow a healthy high anti-oxidant diet. I am 61 now, mobile with exception of one hand partially paralyzed-wasn't diagnosed for 4 years and delay of treatment.
I did not have a recurrence of stabing pain when I went off the meds. I'm grateful of the progress. I have a very low immune system. The internal RSD is tough to deal with. For me, the bad part of being on high neurotin was the weight gain, which is now slowly coming off. The sleep -fibromyalgia med causes weight gain also.
My RSD quickly followed breast surgery and underarm benign tumor. Swelling and frozen shoulder.
I hope some of this is helpful. I've been thru different treatments. One that was really helpful was desensitization by my hand Dr. Also, even though I wasn't diagnosed with rsd, I immediately had physical therapy and massage therapy on my shoulder, then remission, then more therapy on other shoulder that became frozen. For me the above drugs and methods helped. I know we are all different, I have both hot and cold rsd. My Dr. of the last 5 years, is a neurologist, psychiatrist, and pharmacologist. He is envolved in trial studies-just built two clinics that have hbot in each of them. That is my next treatment. Take care,loretta soft hugs
p.s. I realize all meds have negative reactions, so a knowledgable Dr. is important and weigh the pros and cons. I was awake all night, not getting to sleep till 5-6 am, so the pain was unbelievable and quality of life was poor, not leaving the house for weeks and weeks. I'm grateful for the change.

I dont know if you able to do theropy,,although its painfull,,it produces fruit in the end.Pool theropy,aqua jogging ,,anything,,Some people cant,,and i dont know if this is your situation,,but even if you can do any type of reps of any exercise this is very beneficial,,Ive personal seen where many people who will not,,or wont because of the pain,or being lazy[this remark is not intended for you],,but we have to keep moving to keep the bone from atrophying and loosing muscle tone,,,,I know that oxy is a short term med,,,then after a while the pain pokes it head thru because the body gets used to the amount and you have to up the dose or stack something else,,good luck to you,,and I will pray for you,,,PM me if you want,,i was a certified trainer for years,,feel free to pick my bain,,,,,,bobber,,,,,,,,,,,,,,,rsd is a nasty disease,,but movement is a must,,i feels so sorry for the ones who are clawing up and wheel chair bound,,ive incausagia with nerve entrapment,,very agressive at a fast pace,,I pray,,and move,,,pray and move,,and alot of times between the meds or depression of my condition with the pain,,i dont feel like getting out of bed,,but we must,,but God will heal us,,,

Mslady--
I am so glad you posted this.
I am dealing with the exact same thing and its so frustrating. My current meds seem to only help with the allodynia and the sharp, pressing pain; but they are not touching with the "hot", stabbing, radiating pain.

My RSD/CRPS has gone internal, its not Sympathatically maintaned, so blocks won't do any good and since I stay pretty active (I have to climb 4 flights of stairs to get to my house) more excersise is not something that is appropriate for me.

So frustrating.......

((HUgs)))

L2L

Hi Dubious,

Very good thought, I think you are right!

I don't know why I didn't think of it myself. I had many many lumbar sympathetic blocks in the beginning of my diagnosis and I had good results from them overall. I stopped getting them when my doctor switched me to the lidocaine infusions. My foot has been going ice cold lately and the only way it seems that I can raise the internal temp is by dipping it in hot wax. LSB's used to warm my foot immediately.

I'll be getting a bone scan this coming week to check to see if everything is ok following last years screw removals. I still have 1 screw that they couldn't get out and that is where the pain is radiating from. It was too solidly wedged in with and they didn't want to fiddle with it. The ongoing saga of how I got screwed by an orthopedic surgeon.

Thanks a million, I feel like there is hope again.

MsL

Dear Lorreta,

You have been through so much. I'm happy for you that you found the right drug cocktail to help with your RSD pain. Mainly I have had cold RSD but lately it has been fluctuating between hot and cold too. I didn't sleep last night either. It's very hard to function and stay focused and positive on little sleep isn't it. I went to the emergency room today because this pain is not like any RSD pain I've ever experienced over the past 7 years. They couldn't do much for me. I had to drive myself so I didn't want to take any medicine while I was there. I'll try to get into see my pain doctor this week if it's possible. It's our Thanksgiving weekend here so he'll probably be booked solid on Tuesday, but I'll try.


Hi Bobber,

You are absolutely right about getting exercise and I try to do as much as I can. I use a therapy band to do some pilates type stretching and that seems to help as long as I don't push myself beyond my limits. I've been known to overdo it and flare my RSD up but I've gotten better at listening to what my body is telling me. Gotta keep it moving and keep it warm. It's a daily ritual but the darn stairs are getting harder and harder to go down each day. It's gotten too cold here and I don't want to go by a pool as I'm too sensitive to drafts right now.

Unfortunately I don't do well on the oxy much like most meds for RSD. It makes me feel sick so it's hard to stack. I keep it on hand for emergencies like this but I was I was surprised it didn't stop the attack of stabbing pain.

In the beginning I was scared to death of being sentenced to a wheelchair. I guess I still am in a way. It is a powerful motivator to keep moving isn't it. Don't forget to breath too. Keep the faith my friend it's what will get you through.

Hi L2L,

I'm sorry to here your rsd has spread internally. This really is a "B" isn't it.


Thank you all for your kind thoughts and consideration.

I would get an xray of that foot. There is a condition called
Charcot's foot...that happens to PNers, and diabetics.

When feeling in the foot becomes compromised small stress fractures can result and be very painful.

http://en.wikipedia.org/wiki/Neuropathic_arthropathy

What I found works best for me is my Methadone. I also use Lidocaine patches. I usually slap one of them on but they take awhile to start helping so I take some Methadone. I don't take it all of the time now as I do have mine under control most of the time except when the weather changes or I overdo it.

The blocks do help. I have seen them work for people who have had RSD for years around my area. I use to belong to an RSD group and 2 of the women did good from the blocks, one got out of her wheelchair. A good Anesteologist is best for blocks in my book.

Lidocaine is being used in a lot of ways today to help people with the RSD pain, shots, pills, infusions, blocks,patches, before surgeries . Good stuff.

I do know what you are going through. Here lately my pain has been crazy due to the weather change. Our weather started changing the first of August. I had my heat on two times in August. I do have MS and my friend that has it started up with pain around the same time I did too. He didn't figure out it might be the weather until I mentioned it to him.

It is possible that you are dealing with other problems in the foot too as someone else said. That screw, arthritis, plantar fascius, PN. There are too many other things to mention and with RSD, it seems like other things come on.

With the Methadone, the dosage for me is low so I don't get any side effects from it. It's also around 40. a month for 90 pills.

Exercise too is important. I have a treadmill that I use often and therabands and weights that I use. It's important to keep moving.

Most of my problems are in my hands and arms and upper body. The RSD in my bottom half is not near as bad as what some are dealing with. I can only imagine what all of you go through trying to get around.

Feel better soon.

Ada

In case you haven't already done so, please make sure you don’t have something mechanically wrong with your foot. There are some types of conditions that are associated with RSD that can cause changes in the bones. You might have something going on in there other than the RSD pain. Maybe there is a crack in a bone, too. It would be good to get a look-see.

I have suddenly developed sharp pains that I attributed to RSD. After a few months, I saw my orthopedic surgeon. He is blaming a lot of the pain on the screw heads. (I have six long screws from a fusion surgery.) He recommends taking them out. I am hesitant about the trauma setting off a flare-up.

So, he gave me a prescription for a topical treatment developed for osteoarthritis pain, called Voltaren Gel. This is kind-of like putting on a Lidocaine patch. Whereas a patch is limited to a surface it can adhere to, the gel can go on any shape. It dries in about ½ hour and you can then put on your sock, slipper, whatever.

I will probably need to have the surgery someday, but this helps the pain in the meantime.

Mike