Remission ; reoccurrence and remission and nudexta
 

Hi all.
I hope you are all doing ok .
I had been in remission from rsd for about 7 years . I used to post on here as Goodn'plenty so you can check out my sordid history ;) I came on in 2010 again to give an update on the how's and why I think I went in to remission. I was never sure.
Imagine my shock and surprise in January 2015 when I started to feel unbearable burning pain in my face. I was horrified and shocked . I was also in major denial for about a week and then it hit me.
OH NO. It can't be ..this!!!
I had a full life again . I didn't know how to do this again. Did I even want to ? etc. I didn't even think about rsd. Sure I lived in chronic pain from all my injuries but I was used to that .
Well , within a week or two I had full body rsd. I was on fire everywhere from feet to hands to stomach to skull . I was scared!
I researched everything I could find , and everyone that I knew to find all the current protocols . I started hyperbaric oxygen therapy right away and have had about 30 plus sessions to date.
A diagnosis was confirmed at a major teaching hospital where they suggested ketamine infusions and low dose naltrexone . I am a bit of a health freak ( raw vegan) so I really didn't want any drugs . The pain was so intense I am not sure how I managed. I was grateful I had done so much healing work in the last 8 years which really helped me meet life exactly where it was at ..but it was hard.
I got 5 days of ketamine e infusions. I was convinced it would work as I believe that's what gave me my remission the last time . I had caught this thing so early so I was hopeful.
24 hours after my last ketamine infusion my symptoms returned. I was pretty devastated but then moved on to plan b.
I finally got in to see my old pm doctor . By this time I had days when the allodynia was so bad I couldn't even put my head on a pillow.
He listened to my teary story and then prescribed nudexta ( with dextramathorphan another mda antagonist)
Within an hour of my first dose I felt better
Within a week to 10 days I am almost symptom free.
I am now certain a miracle can strike twice in a lifetime !!
2 weeks ago I was wondering how I would recreate my life with full body rsd and now I am making plans . It's been the scariest and most life affirming 4 months ever ! I am super grateful and if this can help anyone I would be so happy !
Take good care all. Believe that remission is possible!keep plugging away!
Best of luck and peace:)

Clarification:
 

I wanted to clarify:
I don't believe the hyperbaric oxygen therapy did much for me.
The university hospital prescribed low dose naltrexone twice a day , morning and night
When I saw my old pain management doc he told me to take the low dose naltrexone only at night. A daytime dose would increase my pain . Good to know!! This minor tweak helped tremendously.
The nudexta(dextramathorphan) was the other great addition.i felt better right off the bat ; almost completely resolved within 10 days.
In a strange way it was a blessing that I had this before. I knew what it was and could take immediate action. I believe my early intervention will be the key to keeping this manageable and to have a successful outcome.
Please explore these options with your pain management team. Maybe they can help !
Good luck!!

Hey, I just wanted to ask a few questions concerning ldn and CRPS...I'm new to this medication; A Neuro told me to try at least three months...I've over come some of the side effects (nausea)... and it helps me not to get :eek: all the time and a few other physical things...as for the CRPS, it just stops the sever burning...I continue with daily stinging, spreading, and flares....I am over coming a minor flare of two days....
I didn't know taking it at night would be better; just did it myself...the apothecary said which every I choose, day or night, just stick to the one I preferred....I do sleep much better with it....I have noticed a slight, tick I guess, when I'm nodding, I find myself still wanting to nod even when the nod is no longer required....dunno just keeping a mental log....plus a sore throat...like the nausea use to, it hits me when ever....
Thanks for any input....:grouphug:

Congrats on knocking this thing back a second time! So glad something is working for you. I second Enna on the LDN questions. I am going to ask one of my doctors about it tomorrow. Did you take it long term? Were you still on it during the reoccurrence? Did it help any with autonomic symptoms? I have read it is good for the discoloration and temp differences and I would love to address those symptoms as well as get the stinging down.

Thanks in advance! I am sending Healing Love,
Littlepaw :hug:

It is possible that the HBOT did play a role...

For anyone that's ever had RSD/CRPS, s/he should have a plan in place in case they experience a recurrence or spread that they can start immediately.

Also, my understanding with the Lose Dose Naltrexone is that the ideal daily dosage is actually lower than what is available by pill and so it has to be done by a pharmacy that does compounding.

Thanks for the questions .
I was not on any medication prior to this thing starting up again in January.
I started the low dose naltrexone at the beginning of February at 3 mgs a day moving up to 4.5 mgs twice a day as prescribed by the doctors at the university hospital. And yes, I had this compounded at the pharmacy. I believe there is a 4.5 mg dose available however I like my meds as clean as possible.
By mid march I had no improvement. In fact I was getting worse and I had already done all the hbot sessions and the 5 days of ketamine infusions .its possible the hbot had a cumulative effect but I can not say for sure
I saw my old pm doc at this time and he suggested the change in low dose naltrexone dosing to the evenings and remaining at 4.5 mgs only once.
I started the nudexta at the same time and ALL my symptoms seemed to dissipate so I cannot say for sure which had the most effect on which symptoms .this is only my experience and I certainly hope it can help someone .bear in mind we are different and respond differently to treatments.
In my 7 plus years of remission prior to this I guess I got complacent. I didn't even think about rsd anymore. I will definitely be more mindful of it moving forward !!
Let me know if I can be of further assistance

Goodn'Plenty,

Could you please return to update us?

Update
 

Glad I stopped by today .
Hope everyone is ok.
The good news is I have a pretty full life again. I hike a couple hours a day ,several days a week , yoga , gym etc . My rsd pain is very low.
It has not all been a straight line
We finally figured out how and why the rsd returned ( we think)
Once I was basically in remission again , I continued to have severe pain in my brow and forehead
7 years ago ( yes 7) I was playing ball outside and I rammed into a post and I had to get7 stiches in my left brow. I had forgotten all about it. :eek:
Over the next several years I experienced left side headaches , sinus pain and stabbing ear pain.I had asked doctors over the years to look up my nose and in my ears and they found nothing .i was used to living in pain so I just thought my old neck fractures and ribresections were morphing into other pain. No biggie.:cool:
Well it turns out I have trigeminal neuropathy ,specifically supraorbital neuropathy ,so I am still having some issues there.
In December of last year it got worse and triggered rsd again.
The rsd has been pretty stable . No big flares ( knock wood)
I am no longer on low dose naltrexone . I am only on nudexta (2xday )and this seems to be doing the job .
Some days I don't feel it at all. Some days I get minor flares on my stomach especially , inner thighs and calves . They are more distracting than life stopping. They make me aware enough to know something is up.
I have a huge meditation practice for many yearsand I am currently on (another) elimination diet to see what makes these subtle flare ups happen. If I can get a handle on the brow pain too with this diet ,that would be great.
Considering all that I live with ,and through, I think my healthy lifestyle and diet and is why I manage this well and stay positive. Keep on believing . You never know when the miracle will happen
Super super grateful:)

Ps
 

I am still SO SOmuch better than I was in December 2014 through April 2015 -on average 90% better .The rsd has never affected my quality of life and my ability to participate in life since I stated on the nudexta . ). I will remain positive and vigilant this time :wink:
Good luck all .