GOOD things happening!! Am I a responder???

[Jacque]

I have to say when I am feeling better the skin pain disappears and I once again enjoy showering with massage jets, these periods tend to not last sadly. Inester7 - LDN is one of the things I kep meaning to try, but having heard some tales about it sending people backwards its made me cautious. I function at a level where I am able to do a little, go out etc for short periods, plenty of resting inbetween, no stress and rarely social functions. Massive PEM if I overdo it.
I really can't risk becoming housebound again that really was the worst time, but if I don't try it I'll never know, what to do??

I tried LDN once and got SEVERLY ill... maybe too high of a dose! But right now there is NO way I could get off of the Norco...it is the only thing that keeps me SANE.... I hate it that I have to have it and know there is some reliance on it but it is the only way I get any sleep or few hours of a little relief... I have gone from "anti" Western Med...to being reliant on pain killers and am having chemo dripped through my veins... Wow....this illness can push you to do pretty desperate things.......................................

 

[Jacque]

Yes it is I can't put presure anywhere - think I need to ask the psychs which bit of PACE and GET will help
Here's hoping your good days return soon - our pioneer

What is PACE and GET? Duh....

 

[Jacque]

Hi Mary,

I understand your concerns about trying LDN. I am one of those who take it successfully and I keep up with people's LDN stories. I think most people who have a bad reaction start with a bigger dose than they can handle. Docs just don't realize how sensitive we are! Even though the usual protocol for Fibro and ME is to start with 1.5 mg, that is way to big a dose for many.

I'd say you could greatly reduce the likelihood of a bad reaction if you start with a REALLY low dose--like .25 mgs or less. Though Dr. Enlander has it on his supplement order form, it is a prescription medication and I don't think you could order it from him without having a prescription.

LDN begins to have an effect really fast (like the day after you take it) so you can get an idea of how you would respond with just a few doses.

Best,
Sushi

I agree with Sushi...I started on the 1.5 and WHOAAAA did I get sooooo sick! Like I had taken Cyanide or something...If you can take it...it is a wonderful drug from what I have read. But start reallllly LOW...and slow...

 

[Jacque]

I have had three rituximab infusions, beginning in May 2012. I have also taken Valcyte beginning June 2012. Beginning September, I started working full time for the first time in my life (I was a teenager when my ME/CFS symptoms began) and have been able to handle 40-45 hours per week, with limited energy to spare for leisure activities. However, I am not symptom free.

Five months is about the average time it takes to see improvement with rituximab.

Boy does that give me hope.....!!!!!

 

[Jacque]

I did feel better for a little while but it didn't last.

That slight improvement and a little taste of life...only to have it all return with a vengence....was psychologically very rough.... got out and did a "little" ... now my friends are calling and inviting me to this and that... only to hear "no" and their reply is always... "but I thought you were better".... Just easier to stay a RECLUSE.... I wish all of us here on this site lived closer...so we could all hang out from time to time... but at least we have this site... As much as it SUCKS it reminds me I am not ALONE!!

 

[Sushi]

What is PACE and GET? Duh....

Fraid that was a joke!

PACE = Cognitive Behavioral Therapy + GET--Graded exercise therapy. The UK's great contribution to ME research!

Sushi

 

[IreneF]

That slight improvement and a little taste of life...only to have it all return with a vengence....was psychologically very rough.... got out and did a "little" ... now my friends are calling and inviting me to this and that... only to hear "no" and their reply is always... "but I thought you were better".... Just easier to stay a RECLUSE.... I wish all of us here on this site lived closer...so we could all hang out from time to time... but at least we have this site... As much as it SUCKS it reminds me I am not ALONE!!

It's one of the reasons I don't post too much. I figure I'll tell everyone if I have more than four weeks of remission. Or even partial remission.

 

[Jacque]

Yep I was gonna do that too...but a few asked me to post regularly...so I have tried to do so... I guess in the long run that might come in handy for those who ride the ups and downs too and realize it is all a part of it... I wonder what his plan is for us if this Rituxan does not do the job... I would think if it was gonna reduce out pain...it would have done that by now... Did you notice a decrease in pain during your brief improvement period? I certainly did not. I asked him for the Famvir...and he declined. He is also not optimistic about the use of Enbrel at this point.

 

[Jacque]

Fraid that was a joke!

PACE = Cognitive Behavioral Therapy + GET--Graded exercise therapy. The UK's great contribution to ME research!

Sushi

HOW FRUSTRATING is that???

 

[IreneF]

Yep I was gonna do that too...but a few asked me to post regularly...so I have tried to do so... I guess in the long run that might come in handy for those who ride the ups and downs too and realize it is all a part of it... I wonder what his plan is for us if this Rituxan does not do the job... I would think if it was gonna reduce out pain...it would have done that by now... Did you notice a decrease in pain during your brief improvement period? I certainly did not. I asked him for the Famvir...and he declined. He is also not optimistic about the use of Enbrel at this point.

Yes, I had less pain. Everything was better except the POTS. The biggest change was being able to recover after I got tired.

I did well today. I washed a bunch of dishes that had piled up *and* made dinner. I really miss cooking.

Irene

 

[Starfive]

Hi Jacque,
I share your intense pain from tip to toe and feel like I could deal with the cognitive decline and the fatigue but not this level of constant every moment, never a relief, 24/7 pain.
Also love the towel comment.
Thanks for sharing a few moments with us all, all of you. sohard for anyone healthy to understand.

and thanks agin for trying out the medication... sending whatever hope I have to give out.

 

[Jacque]

I could be way off track but after reading the book Betrayal of the Brain (about CFS/FM) my suspicion is that us with the chronic head to toe pain may fall into this brain damaged limbic system category?? I did a mild pinch and poke test on my body yesterday and the only things that were not tender to touch were my NOSE... and my HAIR.... No wonder I am getting very MENTAL...

I could deal with this whole illness with much greater ease if I didn't feel like an Alligator has me in his mouth...

I know I tried Cymbalta a while back and it DID help with the pain...but I got terrible side effects! Sushi says I needed to start with much lower amount and work up...and that Strattera helped her FM pain... I think I am gonna go back and try one of those...

Why would the Cymbalta have helped my pain if it is not something "BRAIN" related???

I think that many of us are gonna have to have Immune regulation in addition to BRAIN .... related therapy... That is just my hunch.... But what do I know... I am absolutely BRAIN DEAD for the most part....and trying to see through the fog to try to find a life......

 

[Sushi]

Why would the Cymbalta have helped my pain if it is not something "BRAIN" related???

Cymbalta is very brain-related--a serotonin and norepinephrine reuptake inhibitor!

Sushi

 

[Wayne]

I could deal with this whole illness with much greater ease if I didn't feel like an Alligator has me in his mouth...

Just wanted to mention that I've been applying essential oils on the soles of my feet the last few days, and have gotten "some" pain relief, primarily head and neck. Also, the pressure in my head seems to have subsided, which has all helped me sleep a bit better. I've been using 3-4 drops of peppermint on each sole, and also a blend called "Serenity".

BTW, I feel I could deal with this whole illness with greater ease if it didn't feel like I woke up each morning with my pillow inside my brain. I've often thought about starting a thread on some of our most commonly thought analogies. I like your Alligator one (Did you notice I also capitalized it?)

Best Regards, Wayne

 

[Jacque]

Cymbalta is very brain-related--a serotonin and norepinephrine reuptake inhibitor!

Sushi

Right...which would indicate it was correcting something malfunctioning in my brain? I was maybe just takin too much?

 

[Jacque]

Yes, I had less pain. Everything was better except the POTS. The biggest change was being able to recover after I got tired.

I did well today. I washed a bunch of dishes that had piled up *and* made dinner. I really miss cooking.

Irene

Well.... Irene...if you got better in both arenas of pain and fatigue/flu I would be very hopeful if I were you!! I am so happy you got to do dishes! OMG....can you imagine if we said that to anyone else???? Hey I got to do my dishes today...woooo hooooo ... and I bet you got dressed too........ This illness is such a THIEF......

 

[Jacque]

Just wanted to mention that I've been applying essential oils on the soles of my feet the last few days, and have gotten "some" pain relief, primarily head and neck. Also, the pressure in my head seems to have subsided, which has all helped me sleep a bit better. I've been using 3-4 drops of peppermint on each sole, and also a blend called "Serenity".

BTW, I feel I could deal with this whole illness with greater ease if it didn't feel like I woke up each morning with my pillow inside my brain. I've often thought about starting a thread on some of our most commonly thought analogies. I like your Alligator one (Did you notice I also capitalized it?)

aBest Regards, Wayne

Another member on this site told me she feels like a Grizzly Bear is ripping at her back! I always use the Alligator analogy and I found it interesting how we both visualize animals with big ol sharp teeth... I have also used the analogy of a VULTURE who has swooped down and dug his talons into my neck and won't let go...

so you are using the Serenity and the Peppermint oil? I am willing to try that! Hell I even drank my own PEE for a month! I think I'd drink frog piss to get rid of this pain...or even lessen it... Where did you buy it...and where did you get the idea???

 

[Starfive]

Sushi, didn't I read on some thread that you wished we could somehow live together, if there were enough of us...maybe the docs would come to us. hmmm,not.

Just think,
Community wide infusions, an all together cohort, super foods, share help, keep the spirits going. Hot baths,massage therapy, visiting acupuncturist, ah the list could go on and on.

and Jacque, Cymbalta really helps me with the nerve pain. At the time I started it I would have put up with many side effects to moderate the pain. Luckily I did not have big side effects so I am still on it now. It does not cover anywhere near all the pain.
My neurologist and also pain management specialist told me about a new medication that could be helpful for nerve pain, named Potiga.

 

[IreneF]

Well.... Irene...if you got better in both arenas of pain and fatigue/flu I would be very hopeful if I were you!! I am so happy you got to do dishes! OMG....can you imagine if we said that to anyone else???? Hey I got to do my dishes today...woooo hooooo ... and I bet you got dressed too........ This illness is such a THIEF......

Uh, no, I didn't get dressed, exactly. All I ever wear these days are sweats or velour running suits and old teeshirts. On a good day I put on socks and shoes.

I'm wondering how I would be feeling if I weren't already taking Cymbalta. Depressed and in even more pain, I guess.

It took me a couple of days to recover from making dinner. I'm going to do it again, but I'll use the crockpot so it will be more leisurely. Tempting fate, I know.

 

[Jacque]

Sushi, didn't I read on some thread that you wished we could somehow live together, if there were enough of us...maybe the docs would come to us. hmmm,not.

Just think,
Community wide infusions, an all together cohort, super foods, share help, keep the spirits going. Hot baths,massage therapy, visiting acupuncturist, ah the list could go on and on.

and Jacque, Cymbalta really helps me with the nerve pain. At the time I started it I would have put up with many side effects to moderate the pain. Luckily I did not have big side effects so I am still on it now. It does not cover anywhere near all the pain.
My neurologist and also pain management specialist told me about a new medication that could be helpful for nerve pain, named Potiga.

I am really considering getting back on Cym... But just going slower... It stopped urine output and I didn't like that.... But I do remember feeling the pain monster starting to attack.. (always starts at neck and then floods down spine and to all limbs from there)... and I would feel as if a lid was shut on the pain signals.... so if my pain is all a result of inflammation as Dr. K suspects...then why would the Cymbalta have helped???? hmmmmm Has anyone tried the Potiga??? I did try Neurontin recently and it numbed me in places I didn't want to be numb.....if you get my drift..