Wildfire spread....help!!
 

Hello to all!!
I have avoided posting a thread about this, hoping it was just a flare or would calm down with meds, but I am becoming desperate and need some advice or some words of comfort at least.

To all who are new, my RSD began after ankle surgery December 3 '08. I was diagnosed 10 days later with the symptoms only in my left foot (on the top). Since then, it has spread to the right foot, to the bottoms of both feet, to both hands, now the color changes are up to both knees, both knees are swollen (they look like they have a golf ball in them), and I am having random burning sensations up both legs to my pelvis. The majority of the spread has occurred in the past month. Almost every day I wake up with more pain over more area. My hands are so swollen, I've had to take my wedding ring off. They are usually burning HOT to touch. My feet are usually ice cold to touch but BURN like they are soaking in battery acid. It never stops. The stabbing pains come and go. The shooting pains come and go. My feet hurt so badly I cannot walk anymore. My hands hurt so badly it gets hard to type (why I haven't been on the forum as much lately) and I have a hard time writing or holding a fork to feed myself.

I am now on Cymbalta 120mg (though I may need to go down on it.....my blood pressure and pulse have skyrocketed). I am on Topomax 50 mg. I am having to take Vicodin every day (which I had avoided doing until recently) just to take the edge off. I now have a low grade fever and headache (no other symptoms other than shaking and tremors.....which could be med related).

I am in SO much pain. The Pain Doc cannot see me until March 26th and wants to see how I adjust to my new meds anyway until then. He keeps pushing for the SCS which I DO NOT WANT and CAN NOT AFFORD. I have no other options of docs within 2 hours of me. I simply do not know what to do???

I read about the Ketamine cream on here. Does that help with the burning? What pain meds do most of you take? I am DESPERATE for help. We are trying to get me a wheelchair (motorized......I cannot use my hands to push myself) but need a script for it for insurance to pay for. Nothing can happen fast enough. I literally cannot leave my house now. I can barely leave my bed.

I try the Epsom salt soaks. I can't say they help much. I burn so much on my feet, I cannot bear it. We are about to lose our house and COBRA. No one else will insure me with RSD until my husband can get a job. I am so desperate and under so much stress......I'm sure that is why I'm spreading so fast, but I can't help it.

One good spot of news (literally). I managed (actually, it was my husband's doing) to get the local TV news here to do a story about RSD!! They came out and interviewed me and my husband for 1 1/2 hours last week and they're going to run a 2 part segment next Tuesday and Wednesday!! I am determined to do whatever I can to get "OUR" RSD name out there!!! They took video shots of my black/blue feet and my red/blue hands and I talked about how we need more research to be done and to raise awareness of the disease!!! I hope I did ok and I'll let you all know how it turns out.

In the meantime, ANY help anyone could offer would be so much appreciated. I am usually more careful about how/what I post......I am just in so much pain and scared and desperate and spreading like wildfire. Thanks and gentle hugs to all!! :grouphug:

Hi Mominpain,
 

I am so sorry to hear that you are not doing so good.

Have you thought about going to the ER. I know a lot of times they don't help but it's just a thought.

Call your Dr. to see if you can get in sooner and tell the Receptionist that the meds just aren't doing their job.

I did PM you also.

Ada

I am SOOOOOOO sorry. Please know that you are in my thoughts and prayers.

I have read many times that severe pain can cause spread. Perhaps by increasing the pain meds you can slow things down a bit and feel better at the same time. Are you getting any sleep?

I like the suggestion of the ER. Is there one nearby where you can get some help?

XOXOX Sandy

Get this......I actually asked one of the ER docs (while I was waiting for one of my nerve blocks.....he just wandered in and was hanging out in my room talking to me) if he had heard of RSD.......and he HADN'T. A freaking ER doc!!! I mentioned that in my TV interview. I should probably go be seen somewhere BEFORE that airs because I have the feeling not many docs around here are going to be real happy with my assessment of them after that (except for my current Pain Doc.....I like him).

A NURSE in the PAIN CENTER in a hospital that was giving me a nerve block had never heard of RSD (and stepped on my foot.....the hurt one.......and tried THREE times unsuccessfully to put an IV in me......without numbing meds).

Doesn't this sound like some kind of a sick sit com or something??? I even live in a fairly large city. One of the problems is that we are literally so low on money I don't know if we can afford an ER visit right now. I can't even go to PT. I try to just stretch and move my legs and ankles and fingers around while lying in bed.

I'm sorry......I'm really not trying to sound so pitiful. I accept our reality right now......I just can't deal with the PAIN. I feel like this disease is killing me......quickly.

Hi Mominpain,
 

That doesn't surprise me about the ER Drs. I will say too, there are so many Nurses that don't know what it is also. I have seen both around here. I sometimes wonder what they learned in School.

I was just listening to the News and they were saying that some of the funding is going to the ER. Not because they don't have good Drs. It's because they need more. LOL Those were their words, not mine.

I think our Hospital is ranked the lowest in Co. It's got a reputation that precedes it. You'd think it was on the local news all of the time how bad it is, everyone knows, wheather they have been there or not. LOL

I would try another one close by if you could. Another thing ask them about what is called the Indogent Care Program. Some hospitals have it. You only pay what you can afford. We have it here but I don't know if other states have it.

As far as Drs. I applaude you for saying what you did. There are websites where they have list of Drs. and how they are rated. Good ones are so few and far between. You'd be surprised how many I have made mad. Now my PCP says to me, Ada, go in and say this and don't say that. LOL

I do hope you start feeling better soon.

Ada

Dear Mominpain,

I am deeply saddened and concerned by this news. I wish I could reach through the internet and give you a big soft hug. :hug:

Clearly the stress you are under is enormous. It is a known fact that stress can exasperate our RSD symptoms and stress management must be a part of our daily daily management of this condition. Have you been able to do any deep breathing exercises? Here is one from Dr. Andrew Weil's site.

"The 4-7-8 (or Relaxing Breath) Exercise
This exercise is utterly simple, takes almost no time, requires no equipment and can be done anywhere. Although you can do the exercise in any position, sit with your back straight while learning the exercise. Place the tip of your tongue against the ridge of tissue just behind your upper front teeth, and keep it there through the entire exercise. You will be exhaling through your mouth around your tongue; try pursing your lips slightly if this seems awkward.

Exhale completely through your mouth, making a whoosh sound.
Close your mouth and inhale quietly through your nose to a mental count of four.
Hold your breath for a count of seven.
Exhale completely through your mouth, making a whoosh sound to a count of eight.
This is one breath. Now inhale again and repeat the cycle three more times for a total of four breaths.
Note that you always inhale quietly through your nose and exhale audibly through your mouth. The tip of your tongue stays in position the whole time. Exhalation takes twice as long as inhalation. The absolute time you spend on each phase is not important; the ratio of 4:7:8 is important. If you have trouble holding your breath, speed the exercise up but keep to the ratio of 4:7:8 for the three phases. With practice you can slow it all down and get used to inhaling and exhaling more and more deeply.

This exercise is a natural tranquilizer for the nervous system. Unlike tranquilizing drugs, which are often effective when you first take them but then lose their power over time, this exercise is subtle when you first try it but gains in power with repetition and practice. Do it at least twice a day. You cannot do it too frequently. Do not do more than four breaths at one time for the first month of practice. Later, if you wish, you can extend it to eight breaths. If you feel a little lightheaded when you first breathe this way, do not be concerned; it will pass.

Once you develop this technique by practicing it every day, it will be a very useful tool that you will always have with you. Use it whenever anything upsetting happens - before you react. Use it whenever you are aware of internal tension. Use it to help you fall asleep. This exercise cannot be recommended too highly. Everyone can benefit from it."


Ask your doctor if he can give you an IV lidocaine infusion. This has kept me going for a few years now. I did not get any spreading of my symptoms even after having the 2nd surgery on my rds foot. I can send you information about it if you pm me with your email address.

You are in my thoughts.

MsL

I'm SO sorry to hear that you are in so much pain right now, MomInPain:hug:! I really wish I could do or say something to help you but I know that I can't unfortunately!

Please know that I am here for you though and that I DO understand what you are going through!!! I am in a pain flare right now also so I understand and feel your pain. I have actually had to take my Ketamine 4 days in a row now which isn't like me at all as I really hate taking it and don't like the side-effects but it is the only med that offers me at least some relief - and even then it isn't enough. My RSD didn't spread as quickly as yours (it spread from my foot to knee within a matter of days I would say and about 3 and a half months later, it spread to my right arm and now possibly my left) but I have been getting a lot of additional symptoms lately. If you ever need to PM me, please feel free to do so - I am here for you anytime you need to talk!!

I know it is hard but please try and move the affected limbs as much as possible as that is probably the best thing you could do right now to dry and improve circulation etc. I have such a hard time doing PT and spend hours crying afterwards but I KNOW it is really important that I try and move my RSD limbs as much as possible so that hopefully, it doesn't make things any worse. My PT's always say that I am in pain whether I am sat doing nothing or doing something so I may as well try and do something and it took me a while to realise that but I think I am finally getting the hang of it now - even though it is still extremely painful!!!!!! I have some exercises that I was given by my PT's on the Intense PT Program so if you would like me to send them to you, please let me know as I am happy to do so!!!

I certainly understand what you are saying about the ER Doctor not knowing about RSD and unfortunately, many others do also!!! NON of the ER doctors round here know what RSD is and it is extremely frustrating having to keep repeating things to them. When I am going to the ER now, I always take a Booklet/leaflet about RSD and make sure they read it and I also try and make my PM Doctor come and see me if at all possible. I am usually lucky as my PM Doctor can usually see me within a day or so but if the pain is really bad, I have no choice whatsoever but to go to the ER.

I am thinking about you and please know that you are not alone as I DO understand what you are going through. If you ever want to talk to someone, please know that I am here for you. Please keep us updated when you can and i'm sending many pain-free hugs real soon - try not to worry too much, I KNOW it is really hard but it's important that you try not to stress as that is only going to worsen your symptoms!:hug:

Mominpain, I am sorry things are so bad for you. I wish there was something I could say to make it better. I do have an answer to one of you questions however. You asked about Ketamoine cream. I have used several different kinds. This last one is by the best. My pharmacist came up with it for me. He is amazing. The bottle reads like this. INDOMETHACIN/KETAMIN 10% Ask your Pm doc about it. I hope he lets you try it. And I hope it offers you some relief. My doctor lets me use it up to 4 times a day. It takes away that top of the skin burning & tightness. It doesnt last forever but it works immediatley. Hope that helps. Take care. I hope thingsstart turning around for you.
Hugs, Denny

The drug I take for the burning is Neurontin. I take 1200 mg at 6am, around 11am & 5 pm I take 900 mgs. At 10:00pm I take another 1200 mgs & it helps ALOT for me. But then I also take an extrodinary amount of Morphine 3 times a day & I use OxyCodone MSIR when needed for BTP (break thru pain).

That is what I use mostly for pain. I take a couple other meds too like Baclofen (muscle relaxer) & Trental (it opens up the blood vessels, heart patients take this sometimes also I believe)

I don't know if that helps you or not but you asked what people took for the burning pain. I also try to keep my feet elevated. I too have RSD in both fee & have been lucky enough that it hasn't managed to spread. It does try to get into my hands & every 9 to 12 months I have a series of 6 SGB's done on each side to keep that in check. They, nerve blocks, do nothing for my feet but so far so good it hasn't gone up my legs either. They believe I got RSD from major nerve damage in the lumbar region of my back. Back surgery probably put RSD in check in my feet. I have had it since 2003. I was literally in an electric wheel chair for several years. I now can walk alot farther than could I could since I had back surgery. I still use my chair when going out though as I can't walk that far, yet. I have also used a scooter. Believe me it was difficult to navigate either one in our house as it is quite small but I managed. I could not take the 5 steps from our bedroom to our bathroom at one time.

Good luck. Oh my doctor wrote a script for the electric wheel chair & I had it in no time at all. The stupid company I got both the scooter & wheel chair thru didn't bill either one out to my health ins., which was Blue Shield of California, within the time limit & I never even had to pay our co-share amount for either one. And BS or CA refused to pay them. They were literally free for me.

Good luck kiddo & I sure wish you luck with it all.

DebbyV

Gentle Hugs
 

Mominpain
I too am so sad to hear you are struggling with pain like this. I really hate hearing of the spread. I sent you an email with some suggestions. But, I just wanted to let you know I care. Much love. Talk to you soon Di

Hi,

I'm so sorry it is spreading so fast. A couple of ideas. I'm throwing them out in no special order. I take 100 mg of topomax. 50 doesn't work. 100 is much better for the burning pain. It really works well for me. see if doc will increase it. 2nd. I've had 2 scs. I'm going to look into the morphine pump. what you could do is contact either medtronics or st jude. they are the main companies that make the units. See if they have any trials going, (I heard they do). They will pick up the full tab for you if they have something going. Call and ask. THe worse that can happen is that they say they don't. Ask hospitals, drs. etc to see what is available for charity. They all have them out there. Just some quick thoughts. I hope they help

Hugs
Mary

I'm going to give time for edits. For all who posted. I'mnot poiting fingers at any one person or post. There is plenty that needs to be edited.

Re-read your post and edit out anything that remotely is flaming or arguementative.

Get back on the topic that MominPainRSD posted about.

This is a support site. If you can't add support when a person needs it, skip the thread.

None of you are in a Dr / Patient relationship with each other. Do not try and DX.

And Roz, I am not English, so IMO that has ZERO to do with a person being strong. I have known plenty of extremely weak English woman. Generalizing, especially on a forum is not a good idea. The written word like that doesn't come across very well.

I've removed the last post from this thread as things are getting much too personal, and this is no longer the supportive thread that we all hoped it would be.

With that in mind I'm locking it down for now.

Maybe we'll reopen it again in the morning for those who wish to reply to the original post in this thread, and for those who wish to be supportive in their words.

MomInRSD - an answer to one of your questions
 

You asked if the Ketamine cream helped with burning. The thread was closed, so I will answer here.

I use both Lidoderm patches and ketamine cream compound. I find both help, but I don't have a tremendous amount of burning - not like I envision many of you have - I have more what must be "cold" RSD. My burning is not much worse than a bad sunburn.

However, the cream does help lessen the pain. My problem with the cream is that it doesn't last very long. Maybe 4 hours. My elderly Mom lives with me, and she puts it on most of my back and shoulders before I go to work. It only lasts half the workday. I don't have a way to re-apply it myself, as I cannot reach the area it needs to go on.

The Lidoderm patches I apply to my upper arm. I have a lot of pain there. They do help, but it takes a couple hours before much relief. I sit at a computer at work, doing graphic design and photo touch up. I don't do a lot of typing. So I use my arm, but not a lot --- and the patches really help with keeping my arm on the keyboard. I wish I could cover my upper body with the patches, but your only allowed 3 a day, and they don't stick well on most of my back anyway. On my upper arm, my shirt sleeve helps keep them on. That is another reason the cream works --- it can be applied to areas that patches won't stick.

I have never had any problems with the cream making me "high" or affecting me in any way, and my Mom's pretty liberal with it, and covers a large area. Here is my "recipe"

2% amitriptyline hydrochloride
2% bupivacaine hydrochlorided
5% gabapentin
5% ketaprofen
10% ketamine hydrochloride
2% lidocaine
"in lipoderm base"

I looked on my container and the quantity says "400" I don't know if it's grams or what - I would say I get about 4 cups at a time. He's really good about it - says use what ever I need. I am not on daily pain meds, so that may be another reason he lets me have what ever amount of this - anything to keep me off daily narcotics. I usually get this refilled about every 4-5 months. It's terribly expensive, but my insurance covers it except for a co-pay.

When I was going to a pain doc, he wrote it as a 90 day supply, so I had to pay 3 months copay, but this doc writes it as 30 days, so I pay one copay. Problem was finding a good compounding pharmacy to fill it. I have to send for it - and they can't ship it to me in the winter, because if it freezes, it separates, and it's never the same.

Also, when I was going to the pain doc, he used 5% ketamine, but the neuro uses 10%. Made a HUGE difference in how well it works. The neuro, though, had always used just ketamine and lidocaine in his creams - and kept the other stuff in there from the pain doc's formula. Since I like this mix so well, he's started using it for his other RSD folks, and finding they like it better too.

My pain doc went out of the pain doc business, to just doing anesthesia stuff. Started going to the neuro for pain stuff, and it's been a good thing. He's been doing injections, similar to trigger point, into nerve areas across my shoulders for the last few months. It's helped some. I have a little more motion in my arm, and a little bit of improvement in my headache that I have had for more than a year. Injections are NO FUN though! He was one of the docs that diagnosed the RSD. Good guy. His use of botox in my RSD shoulder was what stopped the horrible electric shock pain I used to have.

Hope you start feeling better soon.

I have removed a number of posts that had taken this thread off topic and re-opened this thread...... and am requesting members to stay focused on the original topic and to please only post here if you can offer support or relevant information on the topic.

thank you

ohh hun iam so sorry that this is happing to you . i know how hard and how scary it is to have it spread so fast. i am so sorry that the epsom salt didnt help at all. i wish that there was something that i could do. i would really call the PM and see if they will take you early since you are having such a hard time

talk to you soon
love ya tons

carrie