Does anyone NOT take meds and somehow tolerate the pain....and can this cause spread
 

My P.C. doc is weaning me off neurontin to try a new med in its place (topomax)..
I thought to myself, (sheesh, I can still think...) since I am weaning off the Neurontin maybe I'll try and not take any meds at all and see if I can tolerate it...
But, then I wonder if this could cause spread!
Has anyone tried Topomax?

To med or not to med...that is the question :confused:
Cold turkey or brain fog??:p

Hugs from Hope4thebest

Dear H4tB -

Short of agressive therapies (and BTW Dr. Richeiner has applied to USC for permission to do ketamine infusions there - following Dr. Schwartzman's protocals - and USC always takes insurance) I don't think that much of what we do effects the march of the Big Brain Fog.

Sure didn't with me, and I hit it with almost everything I could, although I sure wish Cal. law would have allowed RUL ECT for CRPS; I had an in-patient treatment using ketamine as the general anesthetic all lined up before the higher ups in the psychiatry dept. put the kibosh on it. Current Dx: organic brain damage 310.1

And looking at Schwartzman's article, I figure either we get it (in various degrees) or we don't. http://www.rsds.org/2/library/articl...ychol_2010.pdf

C'est la garre.

Mike :hug:

Hi Hope4.

I am not a doctor, but my experience has been that more or less medication does not make much difference regarding the spread of CRPS. I have experienced CRPS spread both off and on medication, and at low and high levels of medication.

I think what is more important, if it’s possible, is making sure to correct whatever initiated the CRPS. For me, I had a crushed nerve that remained in an agitated state for a long period of time. Had I been able to correct the agitation sooner I may have had more success treating and reversing the CRPS. By the time I had corrective surgery the CRPS was already well entrenched and spreading. Of course depending on each situation, surgery or other correction may not apply.

I think properly monitored exercise is more beneficial for preventing CRPS spread than medication or no medication. But if the source of agitation has not been corrected, then exercise will possibly worsen the CRPS. Meaning, the exercise I did before the corrective surgery only made it worse, the exercise I did after the corrective surgery was beneficial (although for me it was already too late to stop the CRPS spread).

Not relating to spread, some doctors I have seen have said that not medicating, and just taking the severe chronic pain, is not good because the constant pain overload can create other complications in the body. I don’t know if they all agree on that but at least some have said this to me. I guess it would depend on how severe the chronic pain is.

All of this is just my opinion based on my own experience. It is very possible that others may disagree having had different results in their CRPS experience. CRPS can be very different for each person.

I hope this was helpful. God Bless You.

Bernclay- :holysheep:

I refused to take opiates for years, in large part because there was a history of addiction in the family. My doc at the time, finally prescribed a time released version without telling me what I was taking.

What I have found is that it's one thing to "tough it out" for a closed period of time. When that period extends to months and years, when you never get any relief, when REM sleep can't be reached, when pain becomes personality changing, it can be, shall I say, difficult? Is it safe to drive when you're Not medicated? Etc. Just somethings to keep in mind...

H4thb....

ME!!!!!!!!!!!!! I take NOTHING!!!!! Not by my choice as my pain is head popping pain..constantly..but my tummy will NOT allow me to take anything..dear god it is hard to live this way that is why I have had other ways to keep my mind and heart busy... Mkaing the negatives of RSD into positives..live by that and i have learned to not think about my future as I don't control that anyway.... As far as spread.. I don't believe it matters only..mean pain without meds..can wear you out quicker..but as far as spread..I believe RSD will do what it wants no matter what!!

Love,. Kathy:grouphug:

Hi Everyone!

GREAT TOPIC! I don't have any professional experience, but with me I have found when I would wean off meds, then go without; my pain would spread (not documented) and of course my pain levels would skyrocket. I would find myself reacting emotionally (sp?) to the pain and becoming a not so loving person. I DID however find that when I was med-free AND I changed my diet to all healthy stuff (V-8 juice, hard-boiled eggs, tons of veggies and gallons of water), my pain levels seemed to peak then hold stable. (Not as many episodes of electric jolts and bone crushing pain) I also found that when I would go back on meds it was much harder to get the pain under control again. It's like once the pain gets out of control I cannot get ahead of it. If that makes any sense. I am curious to see what others say...

Kim

For the first couple of years I took no pain meds, then my doctor finally talked me into it. As time went by we both realized it wasnt helping much so he started trying different and stronger meds.

Then my doctor decided not to accept my insurance amd I went cold turkey coming off some serious medications. That nearly killed me, but no spread. I didnt take another pain med for a bit over 2 years, and learned that we need to find things that distract is from thinking about pain. For me it was online gaming because of the lack of physically being able to do things.

Once I was approved for medicare I was able to get back in to see a doctor, and of course chose the one I knew amd liked the best. But this time I am only on a lower strength norco for pain, and try to balance my life with distractions and meds.

The spread seems to happen whenever, or where ever it wants and nothing we do can stop it. Just try not to get physically injured because that seems to cause it to spread to the injured area.

Hope this helps :hug:

There is hope.
 

I believe that your body adjusts.....or at least mine did. I only take ibuprofen when the pain is bad and I have Meloxicam for when it is really bad. I am learning to tolerate and am thankful that my condition is not as advanced as many others on here. I have allergic reactions to all the pain meds I have tried. The only thing with the meloxicam is I feel medicine heady the whole next day. Have not tried Topomax, but wish you all the best. A towel warmed in the microwave or a warm bath works wonders. Hope this helps you and good luck. I would not choose the brain fog...I have teens and they might run amock if I wasn't "all there." Ha! They may think that anyway. Tee Hee!

Dear H4TB,

I currently take Topamax along with my other meds. I no longer use opiods for my pain, but I did for a long time. Before I was on Topamax I tried both Lyrica and Neurontin. Both of them I started and stopped within a few weeks - they made my dizzy and stupid. I also gained weight (YUK!!) while taking them. Topamax does not have that side effect. It does make things taste funny, and has turned me off to certain foods and drinks.

Topamax helps with head pain/migraines, that is the primary reason I switched to it. When my RSD was raging, I could tell if I missed a dose - the back of my neck and my head and right shoulder would start to burn, especially in bad weather. I take 200 mg a day. My doc told me to increase it to 300 mg, but I hated how I felt on such a high dose, so I went back down to 200.

The ketamine infusions have been reasonably succesful for me, but I am still receiving boosters quite frequently (2x a week for the rest of this month, and then once a week for the month of June). At some point perhaps I will be able to drop the Topamax and rest of my meds, just like I was able to eliminate my opiods, and try living a drug free life...I will have to check with my doc on that one.

Good luck to you, XOXOX Sandy

I weaned myself off gabapentin and wasn't on any medication for a couple years. There was a steady but minor improvement in symptoms during this time and I was getting back a lot of usage of the hand before I was reinjured and the condition greatly worsened in the next few months.

Thanks for the good info!
 

I learned more from your posts on this topic than I have from the two docs that I asked! Thanks for the insight and personal experiences about meds, no meds, pain and spread.

It seems most everyone thinks that the spread is not dependent on the quantity of meds..apparently, the spread is goin' to happen if it wants to...Of course any long term pain can wear you down...unless you can truly master mind over physical matter. (In fact, I am curious to read about the yogis who are able to walk over burning coals and can endure physical feats that involve incredible pain..there are those who can lower their heartbeat to practically nil..)

The info everyone shared gives me some confidence in weaning (makes me sound like a puppy :p) from the Neurontin. Long term pain will wear you down, but it seems the spread will happen willy nilly if it wants to, with or without....

I am feeling a lot of extra burning tonight but I'm going to hang in there and see what happens..I want to be free of Neurontin when I start the topomax..
In the meantime, I'll pretend I work in the circus and eat fire...:cool:
much love to you xoxox
Hope4thebest :hug:

Hope4thebest, Good topic. Originally my pm Dr. told me if the pain is not controlled my RSD will spread, but my RSD spread. During a flare there is no way- I need to be on pain meds and other meds. I agree with Bernclay2. When I stopped using my original site of RSD(nerve injury), my RSD had calmed down and I have been able to come way down on meds. When I think back every time I had a flare it was after PT had me try too much with that arm. I also found when I am on high doses of meds I push myself too far and then I would cause more spreading. I find it is important to be on least amount of meds that I can tolerate and that way i won't over do something. One pm Dr. told me "no PT except hot water therapy and nothing repetitive. This advice has helped calm down my flare. Meditation & relaxation techniques also help control my fear & anxiety of the pain. So i guess if i met someone that was just diagnosed i would suggest least amount of meds that can tolerate, avoid using primary site of RSD(but try to keep gentle motion of area), hot water therapy, relaxation/meditation, and support group like this. momof4

Hi momof4
I was doing warm water therapy and the insurance stopped authorizing it (even though four docs have written in there reports how necessary it is.)

I waited around for approval and it never happened so I have resumed it and am paying out of pocket for it and taking only a half hour lunch and working a half hour later to make up for my warm water P.T. time....(I'm hangin' on by a thread with this pace...):thud:
In trying to get the edema down in my lower limb so they can complete the EMG test and also do a Bier block in my lower leg/foot but no veins are visible..

I have been over zealous with the movements and I've created a huge flare...
I I agree with your doc...gentle movements in warm water is the way to go...but I've been trying to flex my ankle repetatively and it is causing mega pain...
One of my docs said the edema is there no matter what I do because it's what RSD does...
But I'll keep trying.

I'm glad your pain level has been reduced by minimizing movement with your RSD site..I guess we have to find the right balance of movement..

Has anyone taken diuretics to get the edema out of lower limbs and did it work?

Hugs from hope4thebest xox

I'm so sorry for your situation Hope - can your attorney help in some way? It just seems so WRONG....I am also being denied everything by WC, and need to use my personal insurance and make the co-pays, etc. It's maddening. And not right.

Keep fighting....and I will keep you in my prayers. You are awesome.

Much love and peace, Sandy

Hi Sandy!
It's so good to see your post, because it makes me think that you are doing OK with your boosters, the traveling back and forth, etc! How are you, dear friend? :hug:

Have you gotten additional relief from the booster you have receive thus far?
What a roller coaster you have been on..I pray that the ride brings you to a place of less pain or no pain at all!!!

I'll talk to my attorney tomorrow about the warm water therapy..in the meantime I'm glad I've taken the initiative to do it on my own....it's the best form of therapy IMHO..it feel so good when I'm in that 93 degree water and able to move in ways that I can't out of the water...I know it's raisin' that seratonin level!! :)
I wish everyone could have the experience and access to a warm water pool.

Hugs from Hope4thebest xoxox

I actually don't take any meds for my RSD. I didn't like the way lyrica made me feel and it made me sleep all the time. So I stopped taking them. I have managed to control my pain mental for the most part but there are those days that it really gets out of control. I am working again at a very easy job and I think that really keeps my mind busy so I dont think about it so much but there are times I stop. Like yesterday it all of a sudden felt like somebody stabbed my arm and tried to separate the bones, it hasn't let up much today but have been working thru it.

Dear Hope,

Thanks so much for asking. I used to love the warm water pool, but had such problems with my ears I had to stop going...I couldn't tolerate the noise level in the pool area, even with my ear plugs!

As of last weekend I am up to a total of 14 ketamine infusions. I have weaned off of all of my opiods (with the help of Suboxone, finally!) and feel the best that I have felt since I hurt myself in Nov of 2006. I truly feel almost 100% better! And it's raining out!

I had an IME today with a doc that is supposed to be on our side for WC. He is a PM doc from RI that I have never met. He knew NOTHING about ketamine prior to meeting me. His opionion is going to be used by the WC judge when she decides whether or not to order the insurance company to pay for my ketamine treatments.

He was amazed at how good I felt and how well my affected areas looked. My right arm is skinny and weak, but there is no discoloration or rash. This doctor thinks that the only way to go for RSD is the SCS!! (Think there's a "rebate" involved there or what??) And he readily admitted that if I had seen him prior to my infusions he would have rejected the request for authorization for the ketamine. But the success that I have had with the ketamine had him astounded - he has never seen any of his patients (he claims to have treated about 100 RSDers in his career) go into remission. He poked and prodded me everywhere and my only remaining painful spot continues to be my right occipital area which perhaps may always be problematic for me. I told him that I felt I was 95% better off than before I started the infusions.

I likely won't find out the results of this meeting until June when the reports are issued to the judge in court. In the meantime, some of the doctor's bills have been submitted to United Healthcare, and there have been a number of adjustments, denials, etc. Even though Getson's office insisted that I pay CASH for his services, and then submit the bills myself to insurance for reimbursement, that is not what happened. His staff has been dealing with UHC and I haven't seen a bill yet - and I've been receiving infusions since April 19th. What a total mess the billing is going to be if/when WC gets involved...

I sincerely hope that this doctor is honest and writes up what we discussed today. He said that in the end he supported the authorization for me to receive ketamine infusions at the expense of WC. Especially since it is my intent to return to work next month. His concern seemed to be how long and for how many units the approval should be granted. And whether the ketamine would continue to work forever...which I worry about, too, of course.

So in the end, it turns out that I did the right thing by obtaining the ketamine with my private insurance and parents' guarantee, because the guy in RI who was hand picked by my lawyer to do the IME on my behalf would have denied it unless he had seen for himself how well I did with it! ONLY IN RI!! (That is why my PM doc is in Boston...)

Please take care and don't ever give up on trying to get what you need and deserve for treatment! YOU ARE WORTH IT!!!

XOXOXO Sandy :hug:

Dear Sandy....

I am so incredibly happy for your super results..You deserve the best forever..feeling 110%..What a story..Thank goodness you had had the infusions already to prove to these boewinkles that remission or at least relief of pain is possible... Life should never be this hard but if it has to..Thank god you are a positive remarkable sucess story....bless you, my friend!!!!! I hope and pray you will have this relief forever..so what about those dumb billing rat races...let them figure it out... you got the juice!!

Love, Kathy:grouphug:

Sandy!
The saga is unending, is it not!!!
Imagine a IME examiner who has treated 100 RSD'ers and was not familiar with Ketamine...thank goodness he finally saw the light !!!...that is a major red flag to interview the docs that we at least can choose to see!!


The QME exam I had last month lasted about 30 minutes...we spoke for about 25 minutes, then we were ready for the 'exam'
He removed my sock and looked at my foot..then he held it in his hands for about a minute...That was it!!! no range of motion, reflexes, etc, etc. no making note of excessive edema, nada, etc, etc. he didn't look or examine the rest of my left leg nor my right leg and foot !! (I was wearing long pants that he never rolled up) I wonder, I just wonder what his report can possibly consist of!! I even wonder if he will be the one who writes it...

The previous QME exam I had was full of facts and exam results with recommendations that were in my favor, including aqua therapy..I was able to read a copy of it...but the wc insurance wanted yet another exam...very scary and unjust stuff....

Sandy, Kathy said it all...you have the treatments..you're feeling soo much better..that is all that really matters...the rest will fall into place..
I am elated for you at how better you're feeling!!

AS I come off the neurontin, I feel mentally stronger!!! I hope I can maintain my 'behavior' tomorrow at the wc insurance company's deposition...I'll try and behave if she pushes my buttons..:mad:

love from Hope4thebest :hug:

Dear Hope..

Good luck today with your hearing..You are very strong and have your facts..Place your words in proper context and with pose and class, which you have eliqently do already..Let them sound like the idiots..Take care of you and plz. let us know how you do....
hugz and I will say a prayer for you...stay calm..

Kathy:hug:

I found out YMCA has a therapy pool which is warm enough for walking or gentle movement and is much cheaper than copay for therapy.

Dear H4TB
 

How did your deposition go..??

Keep us posted!!

xoxox Sandy

I have been with out med for a long time. I am in constant pain 24 hours a day there is no relief. I refused meds one because i don't want to become an addict two they would zone me out like a zombie and i coujldn't function. three it just made me high and never really seemed to work. right now no one knows what to do about it. Yes it does spread and gets triple the amount worse if that makes any sense to anyone. I suffer day but fight to put a smile to get through my day with my kids. I am hoping the neuro has some great ideas because im about to throw in the towel.

Hi Momlovetobake.

I am sorry you are having a bad time right now. In 10+ years I have tried at least 20 or more types of medications. Some gave me the kinds of reactions you are describing. I just wanted to say, don’t give up. It can take a while, but if you cycle through enough options with a good CRPS specialist, you will eventually find something that works the best for you. It may not be perfect, but it will certainly be better than it may feel right now. Keep trying, things always get better eventually. God Bless You.

Bernclay- :holysheep:

Momlovetobake
I hope you're neuro is being pro-active for you and trying to find some relief for you pain..that is a long time to be in constant pain and have the responsibility of a family with children.
when is the last time our neuro suggested something new?
While I tritate off Neurontin, I want to see how it goes, but the doc wants to try Topamax next as well as a block behind the knee called a popliteal block for my lower leg and foot..They can't do a bier block because of all the edema.
Have you had a Pain Management doc work with you who might have some different ideas for relief?
Please don't give up on getting some relief :hug:

Sandy,
The depo wasn't as harrowing as I thought (unless I'm being naive) ..we have to complete it on another day..it ran into overtime..I felt somewhat at ease because my tale is straightforward and true.."The truth shall set you free.."
I was told I'll be able to read the report when it is available..
Sandy, I hope you doing well and getting closer to feeling even better!
Keep us posted! :hug:

Momma...bake..

I am sorry for your pain ..I gather from your post that you feeling somewhat spent and fustrated..I want to address this from another prospective as I am just like you in that I am not able to withstand any medicine either...Cold turkey girl is who I am ...I know what it feels like not to have any drug intervention..we at the mercy of our mean pain straight out but not tied to the effects of the drugs.. kinda bittersweet..and I may be the first to meet our maker and head for the mountain due to my chronic full blown whole body RSD.. but I am happy about being able to place my feet on the floor eachday and feel the love of others..This is a huge process... And I am sorry you are part of it... we are left with the choice of living with a smile or without a smile..allow the smile shine from your heart and be happy as we are not weak..we are strong and we are fighters for what ever tomorrow adds to our plate..I know one thing..the love..you take it with you...but I also want to enjoy it here with you and others here on the NT board and my loved ones in my life as long as I possibly can...Continue to fight and never bend... hold on to that towel...it may come in handy to wipe away tears but they should only be short lived..however..they are important but then be ready to tackle our delimena..RSD.

Hugz, Kathy:grouphug:

Thanks Bern and Hope I still have not gotten a call from my neuro. I call he office they tell me the records are not there. I call my regular doc i see every two weeks and he says oh i sent it. So i begged him to personally call and im hopingi get a call. I had a pain dr but he was no help he kept naming all sort of other things that were not happening to me. Its rough being in constant pain and managing a family.. I think i went from being alittle depressed to really bad...Everyday iwanna scream. kathy thank you so much for that i needed to hear that. It's a everyday battle to keep it together. My family don't live here and I dont even think they know what im really going through. The only person that hasw great concern is my grandmother and she is unable to be with me. Its just me hubby and the girls. I just want this to be over i so miss my life before this..your right i thank god for getting me through and allowing me to get through my day for my kids and my husband. Thank you all and thanks hope for the post.

Momma..just when you think I have said my peace..I gotz more... we knew that was possible! It saddens me when you said you want it to be over as you miss your life from before..Oh dear Momma..that is a screaming heart..We all know how that feels but you must look past that and admit and believe this is our new selves..our new life and as aweful as it seems we have postives that have risen from our RSD..That is we have become the strongest, most sensitive, heartwarming fighters out there... We are so not done because I swear we were given this chance to live with RSD to help others see that it is poosible and that we do not cave..on no..we live and move forward with a smile for others to see that we will not be pushed over..We will only look forward to tomorrow so we can get up and try again for another wonderful day..Hang in there Momma..as you can see you are loved and we won't allow you to fall....

Hugz, Kathy:grouphug:

Thanks Kathy...I will remember that.

Dear Momlovetobake... Easier typed than done..but never give up..You are loved right here!!

Kathy:hug:

Thanks so much Kathy caring means alot..

KATHY!:eek:
Ask your doc about topical ketamine, fentanyl or some compounded forms of medications that are applied as a cream one to more times a day. There is no reason to suffer such pain as we have on a daily basis without some sort of relief if even for a short period of time:hug:

First I give so much credit to everyone here for battling but people who have families and kids the strength you have is amazing. I can't even imagine as taking care of myself is hard.
Anyhow on to the ? I have had times of being on meds and no meds. For most of my rsd accept the first few months I have not been on narcotics except maybe once a month a pill. I don't see the connection of my spread though between the times I was off meds completly. I am not sure why the spread or flare ups. For ex I was making progress very slowly but progress and then out of no where I had a flare up that never settled down. Same meds and same routine. I am super sensitive so a knock on my rsd leg can send a flare up that will last. I do feel the right amount of activity meaning not too much and not little is very important. I also do feel that I compensate for the rsd leg that is the worse and this creates problems in itself.
Momlovetobake I have been to a few pain docs have been suggested a range of different treatments. Is there a possibility of seeing another one for another opinion? I see a neuro too cause of my PN and though he did some with meds other treatments the 2 neuros I have did not do so well with. I am not saying yours is like this just my experience.

Pooh... (I just love that name!)... I have been on the fentanyl patches before..Slapped that baby on only to find later..I couldn't pull it off...OUCH... As far as cremes..I have made a mental note about asking for the Ketamine creme at my next appt..but not to sound crazy but touching my skin to apply it has my attention..but I will do whatever it takes....

Have a great day...Hugz, Kathy:grouphug: