Remission !!!!
 

HI all,

I hope everyone is doing OK .

According to my"history" I have not posted since Nov.2008.
I see a lot of old faces on here and many new ones .That makes me sad .

I want everyone to know that I am in remission !!!
I have been in remission since July 2009 or so....
Remission is indeed possible even after exhausting every avenue out there to get well and heal .I know I had.

I was diagnosed with RSD in 2001 or 2002.
During the course of my illness I saw some of the top specialists in the field including Dr S. in Pa. who recommended that I go to Germany and get the ketamine coma :eek:

I am not really sure what precipitated my remission.
I had several to many ketamine treatments prior to getting better .
I also underwent regular HBOT .
I saw a naturopath who gave me a "healing tonic"which caused me to get sicker than I have ever ,EVER been for 4 or 5 months. My RSD spread to full body . I thought I would fall over and die from the pain and burning on many occasions .
He told me I would have to get worse to get better but that was ridiculous!
I was relentless in my search for a cure .

Now, I am GREAT.
I am off all meds including topamax
I have lingering health issues esp. from Thoracic Outlet which caused my RSD in the first place , including shoulder issues and cubital tunnel.
I also have "stuff" going on from the dystonia which affected my hands and feet .
I have early onset (waaaay early but that's what they call it ..lol) pre- menopausal osteoporosis...from the meds perhaps sucking calcium from my bones ?
I don't know .

It's not always easy but......

I am free from RSD and all is good. It IS possible :) YAY. !
NEVER give up HOPE.

My current life is blessed .I have been a vegan for almost 2 years and mostly raw vegan for over a year .
Dietary and lifestyle changes effect everything
I feel really good health wise ,mentally and my energy ...AMAZING!
What a difference !
I am working out more than ever ( I never stopped despite the pain ). I walk up to 12-15 miles a day and do many other forms of cardio and weight training. :cool:


Good Luck to everyone and never ever give up :)

Peace all
GnP

GnP -

Nice to see you up here again. :hug:

I wonder if anyone else has tried a long term vegan diet? Anyone?

Mike

Wow !

That's fantastic !

Do you mind me asking, was the HBOT covered by insurance ? Some of us were just discussing that here.

I'm assuming you had to pay privately for Germany/ketamine......Did you have results quickly from that ? How long did you have to be there ?

WOW - Awesome!!
 

Congrats to you!!

I would guess that you don't work, if you have time to walk 12-15 miles a day. Either that, or you are a really fast walker!! It's great that you have so much energy.

can you tell us more about you ketamine treatments and the HBOT that you received? Like how much, how often, and how soon after you went into remission?

thanks so much. Researching and then arranging to get treatment is an all consuming task here in the North East. It took will be 2 years from the date of my diagnosis when I finish with my initial low dose outpatient ketamine treatments. At that time I will have been out of work for one year, and need to return in order to keep my position and (more importantly!!) my benefits. All I have done since last January is work on getting the low dose ketamine infusions so that I can try to get better. It shouldn't be so hard for us to get access to the treatments and corresponding insurance coverage for them....especially since, at 70%-80%, ketamine has the highest success rate out of all the treatments out there.



XOXOX Sandy

Wonderful News
 

Hi

Congradulations! I'm so happy to read that you are in remission. I am also. Zyprexa has been a wonder drug for me. I pray that everyone here goes into remission and escapes the awful pain of RSD.

Pam

Thanks for the warm welcome:)

Sandy ..I wake up around 4:30 or 5 AM . I often do 2 hours in the gym before most people wake up...or more.
I also walk late in the afternoon .My days are full .
I was keeping up with cardio workouts through out my illness though not like now .Being an athlete is a big part of who I am .I was not going to let a little thing like RSD slow me down .;)
It kept me somewhat" sane " during the hard times .
Eating whole ,easily digestible foods for fuel has certainly increased my energy and stamina ( more on that later ).

Finz - I paid out of pocket for the HBOT. The center I went to had an RSD protocol varying the dive depths from shallow to deep. I did about 10 "dives".
I never went to Germany, thank goodness.I got better before I had to make that very difficult decision.
My PM doc here (past tense :))) performed approximately( I forgot the exact number) 8 one day ketamine treatments - the equivalent of the booster infusions over the course of about 4-5 months. I received 2 treatments in a row when I was feeling particularly poorly .

I received the last 3 treatments (ketamine, naturopath and HBOT) concurrently hence my hesitation to label one as "the cure".
Maybe it was the combination of all 3 or just one , or maybe it was a function of time . I cannot be sure:confused2:

Mike - in a nutshell (the abridged version )- an acidic body is prone to disease and inflammation . Dairy ,meat , sugars ,coffee etc cause the body to become acidic hence disease prone .
Eating whole foods from the earth creates an alkaline environment in the body which is much much healthier for this and so many other reasons .
I am actually getting an advanced degree in nutrition and related fields as we speak.:)
so... lunch at that healthy place we went to again soon ?:winky::)

Pam - so happy for you too !!!!!

Happy to answer any questions.

Peace.

HI Good 'n Plenty

When I saw the word "Remission" followed by all the exclamation points, my heart raced with anticipation!
Thanks for coming back to the boards and sharing this miracle! You must be in a state of extreme happiness, having escaped the shackles of RSD...

I have some questions!

1. When you had RSD in your feet, (as I do) what kind of cardio exercise did you do? (Any walking for me creates 'off the charts' immense swelling, burning, redness and nerve pain!!)

2. Can you give an example of a day's diet that you adhere to?
(breakfast, lunch, dinner, and snacks..and any supplements you may take!)

3. After which treatment and intervention did the remission begin to appear?

4. Did you do acupuncture and /or meditation/visualization?

5. I know it's hard to determine, but what is your gut feeling on what truly finally put you into remission?

Thanks so much, Good 'n Plenty! I know these are a lot of questions, but I know others are wondering, too !!

Thanks for adding some sunshine to our day!!!!! I wish remission were contagious!!!!!!! :p I'm so happy for you!!

Hope4thebest! :hug:

Thank you so much for your encouraging words and story. It was just what I needed to read after a really tough day. I wish you continued remission and shining health. I would certainly be interested in learning more about a vegan diet. Especially any hints for someone in a very rural area. I am happy for you, God Bless you and keep you!

Hi GnP, Thank you so much for your letter and encouragement. We are thrilled for you!!!!!!!! I had two remissions at the beginning following physical therapy and massage therapy. Now I'm full body plus internal 15 years now. My Dr. just built two clinics with HBOT. He is having amazing results for various reasons. I'm considering HBOT. How many treatments did you have. Did you do one hour treatments at 2.2 or more? Did you do the ketamine first? Please give me a few details PM . i would appreciate it so much. You didn't go to Germany did you? Have low dose here? of ketamine. Thanks again, Your friend, loretta:grouphug:

Thank you for the positive post. I am happy for you and it helps me hold to hope. You are really living life and working hard too.

I wish remission were contagious!!!!

I wish that for all of you too Hope ....

On to the questions:)

Question:

1. When you had RSD in your feet, (as I do) what kind of cardio exercise did you do? (Any walking for me creates 'off the charts' immense swelling, burning, redness and nerve pain!!)

Answer:
My cardio training was much more sporadic when I had RSD.
If I was in a flare I wouldn't do it or, I would do a little and listen to my body and it's response .When I wasn't in a flare I would get on the elliptical.
I did gym work outs when I was feeling well .
Sometimes I would pay the price with increased pain
My RSD started in my hands.My feet joined the party some time later later so I was able to do cardio fairly easily the first 2 or so years ,blocking out the pain for those 40 minutes of zen:)

Question:

2. Can you give an example of a day's diet that you adhere to?
(breakfast, lunch, dinner, and snacks..and any supplements you may take!)

Answer: to you and Lisa - sort of -

I usually start the day with a fruit /green smoothie. SO filling !
I use fresh fruits from the farmers market (eg.strawberries ,a banana and blueberries ) and mix in a couple of handfuls of leafy greens. I use water to get it all going in the blender.
My favorite greens are kale and spinach but collard greens ,dandelion etc work just as well. It is best to vary your greens .
Leafy greens are so, so good for you .They are filled with vitamins and nutrients .
Fruits and vegetables contains loads of easily digestible fiber too.Good for the colon; the whole internal and external bod( you will glow :))
Green smoothies have been shown to cut the cravings for sweets and other unhealthy processed and sugary fare throughout the day .
Depending on how I feel I may use raw hemp protein which has a divine nutty taste for some extra aminos and protein.
For lunch and dinner :
I am a bit of a grazer. I always have fresh vegetables cut up in the fridge .
I get nori wraps( the stuff they use to roll sushi-.in my case raw ones from a local raw restaurant ) and make salad rolls or "sandwiches" all day long. I LOVE these and I can eat forever without fear of weight gain (lol) or that heavy full feeling . The food I eat is so nutrient dense and delicious.
I probably eat over a pound of greens and other delightful vegetable goodness all day long
. I can make them "to go" as well .
Remember color - the more color the more nutrients .I love red cabbage ,spinach,carrots ,zucchini ,bean sprouts etc . I eat way way too many onions !!! Stinky-:rolleyes:
I probably eat approx the same thing for dinner .A smoothie if I feel the need for something sweet. I am a creature of habit .
As you change your diet ( I call it a lifestyle ) you will notice that you start to crave these new delicious wholesome foods.
I will walk a mile ( and I have driven many more) for a good salad !. I never use dressing just some fresh lemon juice .
I think about grapefruits when I am hungry :eek: A grapefruit is often my snack food .
People who think consciously about what they eat , eat a lot better and eat more quality ,nutrient dense foods than those who "assume" they are getting all their nutrients from a piece of meat or poultry .The steroids , antibiotics and saturated fats alone in these foods are enough to make any one sick,not the picture of good health , as many "assume"

Vegans have about a 50% lower incidence of many cancers , strokes and heart disease .Type 2 diabetes is completely reversible through diet and lifestyle .New studies have come out linking breast cancer to dairy . Dairy has been linked to many diseases including many of the the inflammatory ones such as RA .
The list on this also goes on and on. .
Read "The China Study" by Colin Cambell ; "The Diet for a New America" by John Robbins ;. Dr Joel Furmans "Eat to Live " and much of Dr McDougalls work which includes a "low fat " vegan diet as the key to good health ; and many others .


NB: the protein myth is simply that .SAD(Standard American diets) have 4 or 5 times the protein requirements recommended . A vegan or vegetarian diet will fill all protein requirements



Question:

3. After which treatment and intervention did the remission begin to appear?

Answer :

I am still at a bit of a loss with this.As I mentioned I received the last 3 treatment options concurrently . I did not feel better directly after any of them from what I can recall ( short term memory for pain is a beautiful thing!!!!:)) . I got sicker after the naturopathic treatment but then I got well.I might think there is something to it in hind site but I would hate for any one to go through what I did with the" tonic" he gave me. I had friends talk me out of hospital visits through the night.
I did not feel relief right after the ketamine treatments but they may have had a cumulative effect.
I did thoroughly enjoy the "dives" and HBOT. I remeber feeling refreshed and a little buzzed after each treatment .
I always kept up with "moving" ie cardio throughout my RSD timeline.
I am convinced there is something to this as I was continually nourishing my cells!!!!



Question:
4. Did you do acupuncture and /or meditation/visualization?

Answer:
I meditate regularly - do yoga and practice visualization.
Meditation is an awesome addition to any life and lifestyle.
Being still,( and not thinking or worrying!!) in general is a good practice ...however you find a means to that end.
I did acupuncture when I was in the depths in RSD. It helped at first but then I recall feeling worse.
I remember a coldness and pain spreading through my calves which scared me and I stopped.
Bear in mind my experience may not reflect other peoples experience.What works for one does not always work for another

Question:
5. I know it's hard to determine, but what is your gut feeling on what truly finally put you into remission?

I think I answered this above as best I could .


Lisa in Ohio - Thanks for the warm words. All of these responses make me really happy that I came back to share :)
Being vegan is a wonderful thing. Of course in our omni/carnivore, processed food society it does take a bit of work.
I think it will be the wave of the future for so many reasons including health, environment ( factory farming is destroying the planet.The fecal matter alone from ff 's is polluting our waterways ad nauseum ) , animal rights and non violence .The list goes on.
For people who are sick the difference can be astounding and life changing!!!
The additives in food ( and what we put ON or skins ) is so long and complex -Unneeded and ridiculous really. I try to stick by this mantra.."Keep it simple"
Our grandparents never had a list of ingredients that they could not pronounce and would take a page to get through!!!!. Many diseases are a response and /or an allergic to these additives . Eliminating them could make a HUGE differences in symptoms we have learned to live with .

Indeed the work to become or live vegan will be more difficult in a rural setting . I live in a big city and my options are plentiful. I do eat cooked foods when I go out with others but most restaurants here have plenty of vegan options.

Going this route is a process- an ever evolving journey .I started being vegan for health reasons but after much research into the abuse of animals on factory farms my thoughts and reasons for staying vegan( the hard part !!!) changed. I could never go back for so so many reasons .
I would recommend listening to that very wise body of yours.It knows so much !!! Be kind to yourself. You are where you are at, in that moment. . Cravings are just that and they pass.
As an athlete I had always had some excellent eating habits so the change was not as drastic for me, as for some.
I haven't eaten processed foods or used condiments,even salt since high school. I did have a serious ice cream addiction so some things like cutting out dairy were harder than others .
to the point:
Do you have a farmers market near by? There must be some local farms that have delicious /pesticide free organic fruits and vegetables???
There is a wealth of vegan material on the web. I know that goveg.com has a 30 day vegan challenge .There are also plenty of sites with vegan recipes from low fat to others. Good Luck and google away !


Loretta- I think I answered most of those questions in my second response to this thread. The only thing I did not address is the length of my HBOT sessions. If memory serves I believe they were each 90 minutes.
I would have to call the center to confirm.
Let me now if I missed something

Ok ...I think that's it. I hope I answered all and then some :D

peace and more
GnP

Hi Good 'n Plenty
First, I am so grateful that you've answered my post so quickly and with such detail!! Thanks for taking the time, as I know your days are open to you now, to do all the fun things you were deprived of for so long!!

You've been on the boards for a long time, as I went back and traced your posts from a couple of years ago! You have been through many modalities and you were a brave one to try even the riskier ones. But I see that you were able to also maintain a sense of humor..:)

Your answers give much information, but especially a lot of incentive since you have had success! There are steps we all can take, stating with diet changes, and mindfulness; they are available to all of us and for no cost!

Mindless eating has become like an analgesic to me, as it is one of the pleasures that I can still do, since I can no longer hike, stroll, or walk more that 100 yards, and it seems to numb the pain and my brain.. :Popcorn: It's just that all the horrible things I eat are causing added weight gain, inflammation, and toxins to my body. :(

It does take a leap of self discipline , and of faith, to turn old harmful habits around, and develop new ones, as arduous as it can be.

I have "it" in my feet and lower limbs...Also, I have been off work for the last 4 days, practically unable to move because of severe back pain, which sent me to E.R. on Thursday. I hope the the RSD isn't deciding to set up camp in my spine and right hip.

Creating new habits is a huge challenge and making time to do all the things that can help is something I have to do. As you know, the pain is so draining and exhausting (I also work full time) that it's 'easier' to take the path of least effort..

Your story is amazing, and you are so kind to come back and share it with us.
I hope you find time to post now and then and continue to inspire us! thanks for the vegan web site!!! :Thanx:
Many thanks!
Hope4thebest :hug: :grouphug:

Dear H4TB,

I am SO, SO sorry to hear this latest news. I hope that even though you are WC and they have placed an inordinate number of restrictions on your ability to seek medical care, you can still contact someone in your medical group for help at this terrible time. Obviously their plans need to be modified ASAP. Did you see DianaA's posting on Stanford's recruitment for a lidocaine study?

Please know that you are in my thoughts and prayers.

Love and peace, Sandy

Quick thought: why bother to assume that back pain has anything to due with RSD or a foot injury at work? Let someone else worry about that. In the meantime, that's what employer provided health insurance should cover: lock, stock and barrel.

Mike

Hello H4TB...

My friend, it hurts my heart to read that you are not feeling so well and I can feel your pain and sadness...I hope that you will have better days ahead..Our rascal, RSD has zero sense of humor..and it was not invented for the weak..H4TB..you are strong..you are a fighter and you have given so much of yourself to all of us here..our family is here for you also...Hang in there and please do not wavier as we will not give up we will only work harder at living with our nasty illness and not to allow the "system" to hamper our positive fight..... I will pray for you in that you will find the strength to smile and not weaken...

Soft hugz...Kathy:hug:

Thanks for your thoughts and words of encouragement..
I think my hip and lower back are shot from limping and lifting the knee caddy in and out of my car when the injury and then surgery occurred 2 and 4 years ago respectively...the CT scan on Thursday also showed lumbar arthritis.
Time will tell on this development which has had me 'down' literally and figuratively since Monday..
I must return to work tomorrow as there are things on my desk that cannot wait..

Let us return the thread to the uplifting news of Good 'n Plenty's remission, though..at some point I may start a separate thread for my back/hip

Gratitude,
Hope4thebest xoxoxo Such good news for Good n' Plenty!! :grouphug:

Good n' Plenty, Thank God!! I am soo thankful for you right now! I have generalized RSD in all 4 limbs, primarily in dominant arm. I am also one that loves physical activity and insists on doing whatever i can at the moment, but with the recent further spread I am feeling defeated. I really needed to hear that someone with generalized RSD has gone off meds and into remission. I have heard someone say, hope is the enemy of acceptance, but if i dont have hope than it feels as if I dont have my faith. I know i have to accept RSD but I have to keep hoping for remission. Thanks- you sure made my day brighter!
momof4

WOOOO-HOOO!!! Ya HOO!! Good for you GNP!!
I am so freakin happy for you hon!!
On top of the world for ya!
You are right NEVER GIVE UP!

hugs hon,
Sandra

New member looking for help/advice/information
 

Good afternoon. I hope you don't mind my selecting your post to reply to but it was teh most recent. I am a new member and am not even sure I am in the right "forum' but if not perhaps someone will point me in the right direction. I am a care giver for a long time migraine sufferer. Over the past 6 years she has gone through numerous doctors and countless medication with no relief. The chronic pain has cost her job and she has no quality of life. Although I cannot imagine the pain, I can tell you that it is also very difficult to watch someone you love suffer daily and not be able to help(please do not take this as my complaining about me as that is not my intent). Anyway, after searching the internet, I am looking for physicians in New York or surrounding areas that treat migraine/chronic pain through a pain pump or the out-patient ketamine infusion therapy that I have read so much about. I saw some posts from people in western New York but they were dated. She is currently seeing Dr. Gosey in Williamsville but the NP that has been assigned to her does not take her pain level seriousl (the previous NP left the practice) and will not even consider the pain pump even though the previous NP was all for it before she left. I have thought of making an appointment with Dr Kreusz(sp?) in TX but if we can find help closer that would be great. Sorry for the long initial post but I am sure you can all understand the frustration in trying to explain your situation. Thank you in advance for any help/advice/information you may offer.

Vegan diet?
 

I am so glad to hear this news. I too went to a naturopathic doctor in January of this year. I have been following a stricter diet, than the gluten free. She too told me that things would probably get worse before they get better and they have. However, I am not giving up, she said it could take up to a year!!!!

This news is such a blessing to me, thank you for sharing.

Jeanie

You might want to check out the NT Headache forum at http://neurotalk.psychcentral.com/forum32.html

Good luck.

Hey all ,

Again thanks for the warm responses :)
I only have a minute but did not want to let this slide

Sandra - so good to hear from you .I hope everything is going OK!
What many here may not know is that a lot of us go back to before NT started. We were members of another board before this one began so our histories are very much connected.

Jeannie - very interested to know about your outcome with the naturopath . Good Luck!

Hope - Have you tried "mindful eating" ? It may be a great place to start.
You are not alone in eating mindlessly.
The big food companies depend on it to keep people addicted to their evil toxins .
The question is "Does eating this way and the suffering it brings ( though the temporary analgesic of taste is so powerful!) ease your pain ???"
On another matter ,I have actually had L4 L5 surgery and some spinal- thoracic and cervical- fractures .
Didn't you read my history in those old posts?:wink::)
Sometimes a cigar is just a cigar .....
Localized back pain can be so many things including misalignment , tight muscles etc.
Localized hip and back pain with referred pain down the butt leg and/or calf and toes can be disc related NOT RSD
I wish this for you ( the tightness ..not disc injury!)- and certainly not (more)RSD !

Mom of 4 ..Hope implies a somehow better and different future.While that is all well and good , it is in the NOW that we live .
If we heal and work on that present , we can directly impact our future no matter what life throws at us so we can have both hope ( and I so want for you all to experience remission) and acceptance .
These feelings of being defeated or conversely of being in charge and content with our lives , can be extrapolated from the "sick " (and /or well ) model to fit any paradigm of "current" living .
The question becomes ...How do you want to live RIGHT NOW in the moment?
It's up to you . takes practice. Always a work in progress:)
AND so much easier when not overwhelmed by pain and injury .

more later . Hope I didn't miss anyone:)

Peace all

GnP

It's really good to see you back and in such fine form. You are an inspiration and a breath of fresh air.

I'm on the same track as you regarding diet but I can't say I'm in remission. I still have too much stress in my life but that's all about to change very soon.

Much peace.

MsL

Thanks MslLady

Love your signature line :)

While I don't think my diet/lifestye cured me ,I do think we can eliminate some symptoms we experience and have learned to live with, through conscious ,healthy eating .That, and really listening to our bodies.

I forgot to mention supplement use:
B12 does not come from any vegetable sources so it is good to supplement. .
As I have other heath issues I take extra omegas.The ratio for optimum omega health is 2:1 in favor of omega 3's .
Many nuts and seeds are a good source.Flax seeds in particular are high in omega 3's and pumpkin seeds for 6's
As I am often lax in seed purchase, I supplement .If you are serious about being vegan beware many of the over the counter omegas contain fish oil!
In this case and all others : ALWAYS READ LABELS . The cover story can be deceiving.
I also take vegan multi and extra D2 as ergocalciferal as D3 is made from lambs wool and not vegan.Vitamin D defficiency is epidemic due to the use of sunscreens and indoor living etc.

It is best to have a vitamin panel performed by a doctor so you can customize your requirements
It is important to note that a well balanced vegan diet will cover all your nutritional needs (except B12) .Probably more so as it is healthy, and "conscious".

Take good care and be well.
GnP