[DejaVu]

Hi,

Although I read this forum often, I rarely post in this forum.

I have had episodes of what doctors have diagnosed as "RSD/CRPS" in the past. I have had episodes in response to surgeries (an ulnar nerve surgery and a sural nerve biopsy) and also in response to an injured achilles tendon.
I am very afraid of ever needing any surgery in the future, as it becomes quite a mess, with a flare and severe pain for years thereafter.

(I also have advanced neuropathy in both feet.)

I have a recent injury to a foot. I am told this is a mid-foot sprain or stress fracture. We are waiting for swelling to calm down, as mid-foot injuries can be difficult to fully diagnose for a few weeks.

It looks/feels like I am having another flare, now in both feet again.

I did not have much help with my prior episodes. Lots of pain meds yet nobody treating me was well-versed in treating this. I did a lot of work on my own. I am very lucky I have done as well as I have done.

Feet and lower legs are swollen. Feet are red, one is purple and red. It feels like my feet and lower legs are sitting in a huge fire. I have severe spasms in my toes and feet. Sometimes, it feels like my feet/ankles are being crushed.
(I have not been able to ice my feet since the initial episodes, years ago. I have to keep them warm.)

As you know, the pain is excruciating. No pain med, no AED med touches this pain. One leg has superficial thrombosis from calf down to top of foot.
(We have checked twice for DVTs and find none.)

The examinations have been excruciating! In some cases, one person had to hold my leg so another could lightly touch my leg/foot. Everyone was shocked with the degree of pain I was in upon examination.
it's all spreading through my body. Now that I am in a flare, just the pressure of a blood pressure cuff sends me through the roof. That pain lingers for days, just from one BP reading. My upper limbs are not turning colors, although they are becoming increasingly painful.

I have been doing lots of Epsom salt soaks. Lots of magnesium lotion/spray. I have found topical Soma helpful. (I also take oral pain meds.)

I have been researching topical approaches. I am very intolerant of meds.

In the past, I have used a bupivicaine/ketoprofen topical.

As I am looking up current topicals used, I see some prescribe a topical mix with a high percentage of ketamine or a high percentage of DSMO.

Has anyone found specific topicals helpful?

Thanks so much for reading.
Any response is deeply appreciated.


DejaVu

[LIT LOVE]

If you have swelling, I highly recommend Morton's Epsom Salt lotion. It's available at Walgreen's or Amazon if you have Prime, and maybe Walmart. I've been surprised how well it works and my Mom also loves it (she doesn't have RSD).

[PurpleFoot721]

Oh, I wish I could say I could help you, but I have read several of your posts that you have left over the years and I would have to say, you certainly know a lot more than I do about this whole mess. I have not yet had a chance to try using any topicals, so there is not much that I can help you with. I do remember my original surgeon trying to offer a topical compounded lidocaine/ketamine creme for my, at the time artritis, but at the time I knew nothing about CRPS. I did not think it would help back then and my insurance would not cover it either. If I only had the opportunity to try it again.

For the most part, I just wanted to take the opportunity to say Hi! I am pretty sure that I remember others talking about topicals. I am sure someone will give their experiences here eventually.

Alaina

[DejaVu]

Hi Lit Love,

Thank you for your suggestion. It's a very important one!
I have been using the Epsom salts topical lotion and the chloride spray. I have also been soaking in the Epsom salts.
I am so glad you have mentioned this though, as it cannot be mentioned enough!

Hi PurpleFoot721,
Oh, you'd be surprised at what I have likely forgotten, even if I did post about something at one time. Lol. It's a part of the mess.
I have found that doctors will often prescribe topical meds IF I bring up the topic and bring the information and/or IF I have spoken with the compounding pharmacist first. My rheumatologist is more open to this and tends to research it herself. Yet, she also gets very busy in her private solo practice and is helped along if I have some info ready for her.

I am surprised with how well topical Soma has worked.

The commercial compounding usually uses a PLO gel which is supposed to help to transport the medication more deeply. I do not like paying the high prices of compounded topicals.

I have found I can negotiate with the local compounding pharmacist, as a part of his pricing equation is based upon getting his mill messed up with a certain percentage or mix of medications and he has to take time to clean the mill prior to making up the next prescription. I had a talk with him and he could make me twice as much (200%) in volume for only 120% of the cost, if I would take twice as much at a time. That helps with the cost.

I also look around on the internet for any topical percentages and sometimes make my own with an OTC cream. The delivery system is not as good, for sure. I urge caution with this. I also watch herbalists make various topicals on youtube, etc.

I think you may find you can still access the ketamine cream if you request it.
It's hard on everyone that insurance does not cover this. It's such a great way to treat pain and inflammation when people have difficulties with meds.

I swear my body does not want another med, no matter what it is. I have always been sensitive to meds and it seems I am only getting more sensitive to meds with time and med exposures.

I am glad you've jumped in to say "hi!"
Welcome to NeuroTalk!

DejaVu

[bizi]

oh I am sorry that you have such pain.
you poor thing...
((((HUGS))))
bizi

[DejaVu]

Hi Bizi!

Thanks for checking in and commenting.
I have missed you while I have been away.

DejaVu

[DejaVu]

I am trying to catch up a bit on the forum...

Yet burning pain is just spreading everywhere. Upper limbs too now, especially the arm that had surgery and prior CRPS.

I have an appointment in the late morning and hope to have my final ideas together for a potential topical mix. I may need to modify the formula over time, yet I need to get something started asap.

I will check back in.

[Littlepaw]

Darn it! You know I'm fond of you but I just don't want to see you over here for this! i am so sorry you aren't just dropping in to say hi.

I am going to suggest a simple med, prednisone. It is often overlooked but is recommended several places, including practice guidelines given by bigwig Dr. Stanton-hicks in 2014. I ended up taking a couple rounds of it early on and it made a big difference in swelling, pain and temp changes. Guidelines call for 10mg three times daily for ten days to three weeks depending on response. That is not a terribly big dose and while steroids do have side effects (and are no good for diabetics if that is a problem) they do have their place.

Start hitting 500 mg of Vit C daily. DMSO is good, but hard to find in the right percentage. I ordered online and cut it with aloe Vera to get it to a percentage that didn't irritate my skin.

What are they doing with your foot? Are you in a boot? Surgical shoe? assisted weight-bearing is recommended for stress fracture but immobilization is bad for CRPS. If you are permitted keep that foot moving with whatever alphabet spelling and ankle circles you can tolerate. Get in a pool and gently swish with a weight belt.

I use a topical of ketoprofen, gabapentin and ketamine that I like. I order lidocaine 4% separately because I don't always want it.

I find it hopeful you have beat back this kind of reaction before. My physical medicine doc in Houston who I am so happy with once told me they have some patients who react this way every time they have surgery. He said he and the other docs start PT and pain control, wait quietly for a few months and hope that it will go away. He said it typically does.

I hope you get relief soon!
Sending hugs and healing love,

[DejaVu]

Originally Posted by Littlepaw

Darn it! You know I'm fond of you but I just don't want to see you over here for this! i am so sorry you aren't just dropping in to say hi.

I am going to suggest a simple med, prednisone. It is often overlooked but is recommended several places, including practice guidelines given by bigwig Dr. Stanton-hicks in 2014. I ended up taking a couple rounds of it early on and it made a big difference in swelling, pain and temp changes. Guidelines call for 10mg three times daily for ten days to three weeks depending on response. That is not a terribly big dose and while steroids do have side effects (and are no good for diabetics if that is a problem) they do have their place.

Start hitting 500 mg of Vit C daily. DMSO is good, but hard to find in the right percentage. I ordered online and cut it with aloe Vera to get it to a percentage that didn't irritate my skin.

What are they doing with your foot? Are you in a boot? Surgical shoe? assisted weight-bearing is recommended for stress fracture but immobilization is bad for CRPS. If you are permitted keep that foot moving with whatever alphabet spelling and ankle circles you can tolerate. Get in a pool and gently swish with a weight belt.

I use a topical of ketoprofen, gabapentin and ketamine that I like. I order lidocaine 4% separately because I don't always want it.

I find it hopeful you have beat back this kind of reaction before. My physical medicine doc in Houston who I am so happy with once told me they have some patients who react this way every time they have surgery. He said he and the other docs start PT and pain control, wait quietly for a few months and hope that it will go away. He said it typically does.

I hope you get relief soon!
Sending hugs and healing love,

Hi Littlepaw,

You see, I was subconsciously trying to think of a way to hang out with you and this warm-hearted crowd more often...and see what I have created? Lol.

I am grateful for your response.

Interesting about prednisone. You have helped me to recall some of what I had read. Interestingly, I am already on 15 mg a day, and have been for three years. I was trying methotrexate to get off of the prednisone and had not yet tapered the prednisone. MTX can elevate the platelet count, although I had only had two weekly injections before the clotting had showed up. We are not sure of the cause of the clotting at this point. I have a history of antibodies which can also cause clotting, so we are searching for those.

My rheumatologist is in charge of my prednisone, so maybe she will jack up the dose for a few days. I see her in the morning. I can only hope so. It's an interesting strategy and may work. Thanks for mentioning this.

I find I am not retaining information well when I am reading up. I forget more than usual lately and must print out anything I want to recall.

Thanks for the info on DMSO and aloe. Also for the information on the topical mix. It's wise, I feel , to keep some of these separate, as you have done, as sometimes we want a certain component and not others. Smart.

I am in a boot. I cannot stay immobilized due to the clotting, as well as the CRPS. I am instructed to do no weight bearing yet. I can have the boot off when foot is elevated and the Ortho agrees I can move the ankle when the foot is elevated.

Vit C sounds great.
I have also read some about NAC being used, I need to go back and read again. I am forgetting things I rarely forget.

My PCP hasn't been much help thus far. He thinks it's best if people go to a group to talk about their pain. I don't disagree. Yet, if they have a choice of being treated and attending PT or talking about their pain, I think the best choice involves the actual treatment and PT first and foremost. Lol. Our state has new guidelines and has a database overseeing all doctors and patients affiliated with the University and he is not thinking straight. He did order Namenda. I had told him I thought the studies done now show Namenda is too weak and if it works at all, will not work for at least 6 months. He said he thought my info was correct and sent the order into the drug store anyway.

MSContin, dilaudid, Depakote and soma... just not touching the pain.

Interestingly, topical soma did stop the severe spasms in feet, toes, ankles and calves through the night.

I am having severe drenching sweats. Anyone else having drenching sweats with these flares of severe pain?

Thanks again, Littlepaw! I appreciate your knowledge and your love for all.

DejaVu

[mrsD]

I am on my phone and linking is tough for me.

But I'd like to suggest Deja that you Google
"Topical clonidine for neuropathic pain".

We've had some discussions about this on the
PN forum here. Dose appears to be 0.1%.
People using this should monitor blood pressure.

I'll look in on this thread when I am
back on my
Computer.
I also second the Vit C suggestion.. Perhaps 1000mg
A day to start... You can reduce to 500mg later.