Hi mrsD,

Oh, thanks for the clonidine suggestion!
I had read about clonidine and had forgotten already.
My memory is not the best right now. I will write this all down for my appointment.
I will also do a search on clonidine, as you've suggested.

I will talk with the compounding pharmacist, as well, prior to my appointment. It will help to facilitate getting something prescribed tomorrow.

I will increase the vitamin C, pronto.

Thanks so much for suggestions. This is all moving along rapidly. Every test which involved any form of pressure on tissue/nerves made this all worse each time, immediately. I had to have the ultrasound testing and one of the techs was not well-trained and put so much pressure on, I haven't recovered from that ultrasound. (Too much pressure also skews the view and can cause a false reading by the radiologist.) I have gotten to where even the lightest touch is too much now.

I am supposed to wear compression socks for the thrombosis. I have worn them since my last episode with this in my feet/legs. I cannot do it now, it's too painful. I just have to keep my feet up and keep doing ankle pumps and the alphabet.

I am deeply grateful for the suggestions offered.

I can not stand the compression stockings. My ortho originally prescribed a pair of 20-30 mmhg for me. I tried them twice but found they are impossible to put on without causing a ton of pain. When I was finally able to get them on, I could only wear them for about an hour before I would have to rip them off from them causing excruciating pain.

Alaina

Hi Dejavu,

I'm so sorry you are also experiencing being in so much pain. Chronic pain is a beast, isn' it ?!


One of the things I have is allodynia that feels like thousands of bees are stinging my skin in addition to other types of nerve pain.

I use a compound cream four times a day .

Can you speak to your doctor to get a RX for a compound cream with capsaisin, marcaine, lidocaine or bupivocaine and ketamine. Sometimes the doctor will put in topical amitryptyline too in place of one of the other things or in addition to it.

I hope this helps you.

Hi Alaina!

Thanks for sharing your experience with compression stockings.
I have been fine with them, for several years now, until this episode of pain and edema. (I have liked the open-toed style.)

Some compression stockings are made of some materials which just do not go well with profuse sweating. This episode/flare involves extreme sweating. I am constantly changing socks and all clothing.

Thanks again!


Hi Vintagewine!

Yes, chronic pain is quite a challenge.
I do fairly well with coping until it flares to this degree again.

The severe burning, the crushing pain, etc. Well, you know all too well.

You have mentioned allodynia. It's a tough one to deal with, for sure.
I do understand. Exacerbated allodynia is a part of this flare for me, as well.
I think it's difficult to imagine just what you've described until/unless someone has felt it him/herself. I was awake last night, for hours, feeling like my legs/feet were covered in stinging bees, just as you have mentioned.

I appreciate your suggestions for topical meds!

We are considering some topical/topical combinations. (Hurry up already! When things feel as though they are on fire, I know I don't want to wait longer for some major relief.)

My rheumatologist and primary care are consulting with one another and we will choose a topical formulation or two.

I know the literature often states people do not react as strongly to topical meds; yet, I react very strongly to a topical if it's the wrong one. I have had batches of topicals ruined because a doctor had decided, at the last moment, to include a med I cannot tolerate (serious shortness of breath).

We are trying to make sure we are all on the same page, have considered all med allergies/sensitivities and all potential interactions with oral meds, etc.

Thanks, again, so much for your suggestions!

I am deeply grateful to everyone taking the time to respond, sharing knowledge and experiences.

I saw my rheumatologist. She had spent a tremendous amount of time with me, assessing the types of pain, the locations, etc.

She is up-to-date on using magnesium and her first question to me was inquiring if I had been using magnesium and in which ways and how often I had been using magnesium.

She feels the recent trauma to my foot, along with flared inflammatory arthritis, is all contributing to the CRPS flare.

Her first inclination is to try clonidine, just as mrsD had suggested. We are trying tablets first. She feels the topical clonidine patches are too caustic. We may try it in a topical cream at some point; yet, it is taking several days or longer to get topicals made up and she wants to get the clonidine started asap.

We have talked about the possibilities for topicals/topical blends.
In the meantime, she will be talking with the compounding pharmacist and with my primary care. I will be meeting with my primary care later this week, as well. He is staying late to see me.

None of this seems like it's happening soon enough when we are in so much pain! I try to remain patient while still pushing for swift movement in the most helpful direction. Both doctors agree, the sooner we get this flare shut down, the better.

The pain gets much worse for me at night, for whatever reason.
Just excruciating.

Both feet are equally uncomfortable, even though one has recent "trauma."
I keep my feet warm and continue to use the topical magnesium, lidocaine 4%, topical soma, etc. I take another Epsom salts soak just before bedtime.

Thanks again, to each of you, for sharing your knowledge and experiences with me. Thanks, too, to each of you sending personal notes of support. I am so very fortunate and deeply grateful to each of you.



DejaVu

Oral may not get into the region well. Inflammation stagnates blood flow...so things in the blood may not reach the target.

This is why the magnesium lotion works so well... it gets into places that have poor blood flow.

The transdermal cream may be the best route for the acute phase.

If you take oral for any length of time, you should taper off it carefully when stopping...removal of clonidine causes a spike of high blood pressure, a rebound of sorts.
Also you should monitor your blood pressure daily.

Dejavu

I am glad to hear you had such a good visit with your rheumy. Thank goodness for that! Clonidine might be just the thing. Not only are you increasing circulation but as an alpha blocker it is damping down the adrenoreceptors on your inflamed nerves. Yeah!

I had to wear compression for a long time after my surgeries. They are cumbersome when you feel hot and sweaty. If toeless works for you, you may also like some of the compression athletic sleeves. A lot of them were too tight for my comfort since they are intended for use during exercise. However I LOVED the Zensah calf sleeves. Good with heat, comfy, wash and wear well.

Thanks for the update. I hope you start getting some relief soon. Allodynia is just the pits but it does bring out one's creativity. You should see some of the pillow constructions I came up with to keep air space around my foot in the beginning. My husband had a ball razzing me about my 'fortress'!

Sending hugs and healing love,

Hi mrsD,

Thank you for commenting! Your response makes so much sense. The circulation issue is a real one in this type of condition. Additionally, I have been having repeated ultrasounds showing extensive superficial thrombosis in one leg/foot. You make an excellent point!

I think she'd felt this was the fastest way to get clonidine into my system, as it's going to take some time for any topical to be made up. One of the major compounding pharmacies in this area has just closed. All of the business went to the other one. I do know she is considering clonidine topical when we decide upon topicals. (I know she wants to know if I can tolerate clonidine before mixing it into an expensive compounded cream.)

She states clonidine has worked well enough to cancel plans for nerve blocks in a couple of her patients.

We will assist the thrombosis in approx. 2 weeks, if it does not clear up on its own. We are thinking we will use a Low Molecular Weight Heparin if/when we intervene.

Thanks so much for the reminders to monitor my BP!
I will do so while taking clonidine and if/when I taper off the oral clonidine.
I imagine I will be using the topical soon.

I deeply appreciate your assistance, mrsD!


DejaVu

Hi Littlepaw,

Thanks for your response.

I am pleased my rheumatologist took it all seriously and was ready to move quickly. She does want to coordinate, if possible, with my primary care, as some of this is his to handle. She is more readily available than he is most of the time. She will be away for a conference soon and wants to be sure he is totally up-to-speed and ready to step up should I need anything while she is away. My PCP has agreed to work beyond his usual hours, in order to see me this week. (He is not in private practice. He teaches at the local medical school.) I am thankful this is all coming together.

You had mentioned prednisone and I want to let you know prednisone was a top consideration, along with clonidine. The concern is: I am already on 15 mg a day and the last time we had to raise that dose, my immune system fell drastically. My CD4 count was under 200. The numbers went back to normal once we'd lowered the prednisone dose. In another case, prednisone would be more likely prescribed/increased.

Thanks for the information on the compression sleeves. I have been using sleeves which are knee high. I need the large style made for large calves, as I was an avid athlete for the first part of my life and my calf muscles continue to appear athletic. I am interested in the material of the type you have mentioned and will look them up. Thank you!

Yes, we do have to become a bit creative, don't we?

For some reason, the pain is further exacerbated in the night. I hope to get some better sleep tonight.

Thanks so much for your input, as well, Littlepaw. Deeply appreciated.

DejaVu

I am surprised, yet quite pleased, the first dose of oral clonidine has helped with all pain. Allodynia (whole body) is also much more calm, as well.

I am more sleepy; yet, I may develop a tolerance.
M.D. gave me a schedule for a slow increase.

The whole-body drenching sweats have also calmed down.

Easy does it.

Love and Light to All,
DejaVu