Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-31-2015, 05:58 PM #31
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Lightbulb

Clonidine is recommended for some women in menopause who have that drenching sweating issue.

I never noticed much effect on pain for me back then, but my arthritis was not as severe as it is today. I never used it transdermally.

I might discuss it again at my upcoming yearly physical though.
http://www.medicinenet.com/alternati...shes/page3.htm
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Old 10-31-2015, 07:59 PM #32
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Thumbs up Interesting Article, mrsD!

Hi mrsD,

Thanks for sharing the interesting article.

I am not totally clear if the sweats were related to the pain or not.

Prior to using clonidine, and in addition to this severe episode of neuropathic pain, I also had drenching sweats, my BP was a bit erratic for the first time ever and I was experiencing ongoing and unexplained tachycardia.

I was having drenching sweats, day and night. Clothing soaked repeatedly.

Clonidine did stop those overwhelming sweating episodes and the episodes of tachycardia.
As soon as I tapered the clonidine to "vapors of clonidine," the sweats and the tachycardia had returned.

My PCP had theorized I was entering menopause, in addition to having this flare. It's a viable theory. However, we probably should have checked an FSH. I can call him and have him order an FSH and along with a vitamin D level, which I can see needs an updated check. I have had difficulties keeping my vit D level up with supplementation (D3) and have been told (by my doctors) the daily prednisone interferes with Vitamin D levels.

Another concern/theory may be the onset of POTS? (Tachycardia and sweating)

I see Neurology next week. I will ask what they think about testing for POTS.

Thanks again, mrsD!



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Old 10-31-2015, 09:37 PM #33
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Lightbulb

People using opiates often have sweating spells.
Also high dose NSAIDS will do it. And low blood sugar
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Old 10-31-2015, 09:52 PM #34
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Interesting situation with the Clonidine. My son had a terrible reaction to it and almost the reverse of what's happened to you by the sound of it. He was on Clonidine when he was little but wasn't on it for all that long. Maybe a few months in total and the exact dose I forget but it was pretty low and was a bedtime dose only. It used to be a first line medication in children who had severe tics plus he had migraines, sleep issues and suspected ADHD at that time. The Doctor was trying to see if it would help multiple problems.

He had a terrible time on it. He was so pale and he perspired all the time. His skin was cold and clammy and was very tired all the time even though the dose was night time dose only. He had to be weaned off it slowly. It didn't help any of his symptoms at all. In fact, I think it made his BP wayyy too low.

I hope you get some relief DejaVu. I totally understand that this is prescribed for a totally different issue for you, but just wanted to tell you about our experience.

Last edited by Lara; 10-31-2015 at 10:37 PM.
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Old 11-01-2015, 07:38 AM #35
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Quote:
Originally Posted by mrsD View Post
People using opiates often have sweating spells.
Also high dose NSAIDS will do it. And low blood sugar
Attacks.
Thanks!
Interestingly, I have been on opiates for over 13 years. I have kept the baseline of MS Contin the same or less. I have increased the dilaudid frequency.

Once I have had a few days of clonidine, I can taper the dilaudid dose down and go back to using it more like a "prn" med, which is was meant to be.

We will see what happens with the sweats, it's looking like clonidine has gone to work on them again, as they are less intrusive.

I am more concerned about the tachycardia which keeps showing up. It was documented in the ER and in office visits.
My thyroid labs are fine. Clonidine seems to help the tachycardia, as well.

Thanks again, mrsD.


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Old 11-01-2015, 08:06 AM #36
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Quote:
Originally Posted by Lara View Post
Interesting situation with the Clonidine. My son had a terrible reaction to it and almost the reverse of what's happened to you by the sound of it. He was on Clonidine when he was little but wasn't on it for all that long. Maybe a few months in total and the exact dose I forget but it was pretty low and was a bedtime dose only. It used to be a first line medication in children who had severe tics plus he had migraines, sleep issues and suspected ADHD at that time. The Doctor was trying to see if it would help multiple problems.

He had a terrible time on it. He was so pale and he perspired all the time. His skin was cold and clammy and was very tired all the time even though the dose was night time dose only. He had to be weaned off it slowly. It didn't help any of his symptoms at all. In fact, I think it made his BP wayyy too low.

I hope you get some relief DejaVu. I totally understand that this is prescribed for a totally different issue for you, but just wanted to tell you about our experience.
Hi Lara,

Thanks so much for sharing.

I am sorry your son has had so many challenges. Must have been very concerning to him and to you, as I know you are a very involved and conscientious mom.

Side-effects and/or drug reactions occur no matter the reason they were prescribed. Thus, your son's reaction to the med is pertinent, of course.

Clonidine does make me very tired. In all fairness, I must mention I am adding clonidine to a mix which I find fatiguing as it is. I take opiates, Depakote, prednisone as the major daily meds. I am not sure just how much Lovenox is also playing into these side-effects. Lovenox was introduced shortly after the clonidine was introduced. The current plan for Lovenox is a total of 15 days only, as long as it clears up the thrombosis during that time period.

I guess I should just relax with it all. I have daily responsibilities though and am finding it difficult to impossible to attend to them. I am finding it very difficult to simply attend these medical appointments. I come home from one appointment and am in extreme pain and exhausted. The more I walk on my feet, the worse it gets. I have found wheelchairs very helpful, especially at the large hospital.

I may look into getting some help here in the house if this continues.
I am often one to cook meals for people in need of help or elderly/disabled people living alone in our neighborhood.
I can barely make it to the kitchen for anything.
We have company arriving visiting from another state. They will be here brunch tomorrow morning.
I have told them I cannot make/cook brunch tomorrow morning. They will work it all out with my husband, as he will be home all day tomorrow. We really want to see them while they are in the area.

Ooops. I think I may be rambling.

I always enjoy hearing from you, Lara. I hope you and your son are well.

Thanks again!



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Old 11-01-2015, 10:08 AM #37
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Default Topical Meds

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.
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Old 11-01-2015, 01:56 PM #38
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Quote:
Originally Posted by AlaskanLady View Post
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.


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