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!!

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.

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

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.

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.

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! 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!