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

I have meet several people who are in the same situation I am in regarding topical meds no longer working. Personally knowing two pharmaceutical chemist & they have told us that a LOT of the drugs are constantly being changed which is causing serious side effects or just doesn't work, this even includes toxic materials ending up in some of them!
I have full body CRPS for over 15 yrs which includes all organs, tissues, etc traveling daily resulting in sensitivity to many different meds. One of my doctors a few years ago helped me in learning/being involved in variety types of herbs & yes even cannabis. So I now make my own oils, teas, salves, etc to help my body heal as best as possible while decreasing some of my pain. Since doing these I've been able to cut down my infections & recovery time for flareups use to be quick until my doctor stopped prescribing certain meds to all patients (due to *DEA regs?)
Not having a doctor prescribe any pain meds has seriously affected my health, so I've been left trying to find alternatives & do many different ones just to survive each day.
I hope you get relief from your pain and if I can help in any way I'd be glad to.
Gentle hugs

Hi AlaskanLady,

Welcome to NeuroTalk.

Thank you so very much for sharing.

I agree there are so many fillers/excipients in meds, it can be tough to tolerate the excipients, even if tolerating the pure med itself. I often have to obtain the brand version of meds because many generics have fillers or formulations I cannot tolerate. (I know they are supposed to be the same; however, they are most often not the same. I am very sensitive to substances and it has taken me a long time to teach this to most of my doctors. They now see more and more people reacting to meds in ways they did not used to react.)


For instance, many meds are not gluten-free and many doctors and patients do not realize this. I need my meds and food as pure as possible. Shouldn't meds be as pure as possible? It seems simply logical to me.

I have read some pain meds have been re-formulated on purpose so people cannot change the form of delivery. I have also read this can make the pain med less helpful to the person with pain and only slows someone trying to alter the med by 90 minutes. People wanting to change the form of delivery into a different form will likely figure out how to do so. People in pain should not suffer because of this. Just my own opinion, of course.

I am sorry you cannot obtain the pain meds you need to help get the pain under more control.

In my state, there is a newly instituted method of watching over doctors, pharmacies, patients, when any controlled substance is prescribed. Doctors have to report any prescription they write to this database. Pharmacies have to report if they fill a prescription of a controlled substance. For instance, there is a file on me. Data is compiled. It shows the prescription dosage and frequency and the prescribing doctor's name. The pharmacy then reports the same information when they fill the script. There is information on how many days I take to fill the prescription, etc. If there is a dosage adjustment, that also must be reported. We must submit to random pill counts and to random drug testing when called in by our doctors' office. We must show up with pill bottles and submit to a urine test within 2-4 hours of being called in by phone. If we do not show up, we are tapered off pain meds, starting immediately. (I know there are days I simply could not make it. If I am heavily sedated on meds, I won't be driving. I don't always have back-up transportation, etc.) This is all a hardship upon doctors and upon patients.
It is driven by people illegally selling/dealing these meds. I say put the hardship upon the people illegally dealing/distributing drugs, rather than upon the medical practices and the people in need trying to get help through legal channels. (Just my own opinion, of course.) My point: Many doctors do not want all of this additional headache. This is an external database and it takes extra time to sign in, to do the data entry, etc. This is an even heavier burden for smaller or private practices.

My doctors are strongly encouraging me to try cannabinoids. I have the written recommendation from my physicians. This is sent to a state regulatory panel, where it is reviewed and approved or denied. I expect approval. All of my doctors want to explore this avenue and I have more than one qualifying condition for approval.

When approved, I have a choice to make: I can either sign up with a dispensary or I can grow plants and make my own product. I can also start out with a dispensary and then ask to switch over to growing my own.
I will be studying up.

I am sorry you have been dealing with full body CRPS.
Wow, I don't know how one copes with full body involvement for 15 years.
You must be a very strong person.

I have had intermittent episodes of this. I have had episodes in a specific limb after and injury or a surgery. It has taken time to get things calmed down. Sometimes up to three years. This time is a bit different. This time involves 2 limbs at a time, with a 3rd limb starting to chime in. Severe pain is also spreading to other areas of my body, with allodynia over my whole body. I am in worse pain if I have used the limbs involved and the pain gets much worse in the night.

I am sure you know what this is like...and more.

I appreciate your heartful post and your generous spirit.

So glad you have joined us here.

Gentle Hugs in return to you.


DejaVu