Aa
About Fibromyalgia help
Is there ANY help yet for Fibromyalgia patients? That is 'besides' those horrid drugs like Cymbalta & Lyrica that give us wretched side effects.
Hi Oldcookie,
I have tried Savella and have been on it along with trazodone, hydrocodone, and baclafone along with many other meds. I Have recently been prescribed lyrica, and Yes, it makes me a little Loopy! I don't know what to do. My pain from FM is at a all time high and I have CFS on top of it so I sleep alot. It seems doing simplest chores tires me out. So, I guess what I am trying to say is that savella is not working for me either. I hope this helps on your discussion for Savella. It is a Very new drug and my Rheumatologist (sp?) said it may not be the answer. I hope you get feeling better soon... Blessings to you!
I have tried Savella and have been on it along with trazodone, hydrocodone, and baclafone along with many other meds. I Have recently been prescribed lyrica, and Yes, it makes me a little Loopy! I don't know what to do. My pain from FM is at a all time high and I have CFS on top of it so I sleep alot. It seems doing simplest chores tires me out. So, I guess what I am trying to say is that savella is not working for me either. I hope this helps on your discussion for Savella. It is a Very new drug and my Rheumatologist (sp?) said it may not be the answer. I hope you get feeling better soon... Blessings to you!
Hi,
I do understand your intolerance to a lot of meds. I am the same way.
Exercise is supposed to be the best for helping fibromyalgia. But you must start slowly and not do too much. Unfortunately, I cannot move much or it makes my 24/7 migraines far worse. Such a disappointment to me in general.
I looked up the CERAGEM which is similar to the Migun, but is DIFFERENT. You would really have to try it a lot at the store to make sure it really helps you. Too bad your friend just bought it without knowing what it would do.
Really wish you the best.
Sara
I do understand your intolerance to a lot of meds. I am the same way.
Exercise is supposed to be the best for helping fibromyalgia. But you must start slowly and not do too much. Unfortunately, I cannot move much or it makes my 24/7 migraines far worse. Such a disappointment to me in general.
I looked up the CERAGEM which is similar to the Migun, but is DIFFERENT. You would really have to try it a lot at the store to make sure it really helps you. Too bad your friend just bought it without knowing what it would do.
Really wish you the best.
Sara
Oh I hear ya rain and sun huh? Ugh I wouldn't like that at all but running across the street to get that lovely fish might be worth it!
The EVCO does lend a nice texture to things and I use it for lots of different things. I recent began "Oil pulling" with evco - you'll just have to google it for explanation. I figure it is worth a try. I get my evco at a farmers market and it isn't too bad but for you probably lots of stuff become costs prohibitive living on an island.
Too bad on the hynotherapy but I agree most of those therapies are so dang expensive. I'm getting some meditations, self guided hynosis stuff on youtube.com and I've been researching self guided cognitive behavorial therapy and it's helping me tremendously with my insomnia - dare I say I have slept going on two weeks now so my results are proof whatever I'm doing is working for me.
That stinks about your friends bed - I had a similar experience and now several thousand dollars later I am in a bed that is mostly comfortable but OMG what I went through to find it and wasted money reselling the other bed for pennies on what I paid.
Keep searching Old cookie for relief. I am now trying the DMSO that Niko spoke of and it really is helping my pain. The funny thing is I just discovered is we buy what we call "magic rub" over in spain - it is called flogoprofen - didn't know what was in it but know it works for my pain. So I get the DMSO which is basically dimethyl sulfate and I'm looking at the ingredients on the stuff we get in spain and low and behold it is a spanish spelling of the same ingredient. So while it is used in europe it just isn't here. I HIGHLY suggest you do some research on it. I can PM with you about this more if you like.
I'm also having success with the transdermal magnesium oil and a bunch of supplements. Niko has been very helpful in adding to my tool box for pain.
Best of luck!
The EVCO does lend a nice texture to things and I use it for lots of different things. I recent began "Oil pulling" with evco - you'll just have to google it for explanation. I figure it is worth a try. I get my evco at a farmers market and it isn't too bad but for you probably lots of stuff become costs prohibitive living on an island.
Too bad on the hynotherapy but I agree most of those therapies are so dang expensive. I'm getting some meditations, self guided hynosis stuff on youtube.com and I've been researching self guided cognitive behavorial therapy and it's helping me tremendously with my insomnia - dare I say I have slept going on two weeks now so my results are proof whatever I'm doing is working for me.
That stinks about your friends bed - I had a similar experience and now several thousand dollars later I am in a bed that is mostly comfortable but OMG what I went through to find it and wasted money reselling the other bed for pennies on what I paid.
Keep searching Old cookie for relief. I am now trying the DMSO that Niko spoke of and it really is helping my pain. The funny thing is I just discovered is we buy what we call "magic rub" over in spain - it is called flogoprofen - didn't know what was in it but know it works for my pain. So I get the DMSO which is basically dimethyl sulfate and I'm looking at the ingredients on the stuff we get in spain and low and behold it is a spanish spelling of the same ingredient. So while it is used in europe it just isn't here. I HIGHLY suggest you do some research on it. I can PM with you about this more if you like.
I'm also having success with the transdermal magnesium oil and a bunch of supplements. Niko has been very helpful in adding to my tool box for pain.
Best of luck!
I will look into 'Savella' but I highly doubt that I can take it b/c I cannot even tolerate Trazanode/Tramacet at all b/c it totally incapacitates me..as I have a VERY LOW tolerance for soooo many prescribed meds of this type. I did not used to have this non-tolerance for many meds. It only came about AFTER I was diagnosed with FM. I know this sounds weird..but it's the truth., Thus is my frustration with 'trying' to get some help/relief.
Another Fibro sufferer friend of mine bought a 'cot' called a CERAGEM bed which I believe is the same thing you are speaking of b/c of your description of such.
It costs her $4,000.00(CDN) and she is trying to sell it on e-bay B/C it did not provide her any benefit at all...mostly she found it very irritating & aggravated the FM pains even more.
This is my comment on .. alas, alas..
What works for some..is NOT the answer for others but I urge to keep posting.
Another Fibro sufferer friend of mine bought a 'cot' called a CERAGEM bed which I believe is the same thing you are speaking of b/c of your description of such.
It costs her $4,000.00(CDN) and she is trying to sell it on e-bay B/C it did not provide her any benefit at all...mostly she found it very irritating & aggravated the FM pains even more.
This is my comment on .. alas, alas..
What works for some..is NOT the answer for others but I urge to keep posting.
Maybe I missed someone else posting it, but Savella is for fibromyalgia. Go look at the reviews on drugs.com. Some people said that it had absolutely cured them. Of course others hated it. It made me nauseated. I take Trazodone which also helps me to sleep for my fibromyalgia which has helped me tremendously.
The suggestions above will be much cheaper for you, but I bought a Migun table which sends heated jade balls along your body and up and down as well. A lady in our neighborhood was ecstatic about the Migun because it had given her relief from her arthritus for the first time. I told her to go ask her doctor about it. She reported that her doctor said that the Migun was especially good for fibromyalgia. That's when I went to the store and used their table almost every day for about 3.5 weeks. It as so great that I bought one, but they are pricey.
The suggestions above will be much cheaper for you, but I bought a Migun table which sends heated jade balls along your body and up and down as well. A lady in our neighborhood was ecstatic about the Migun because it had given her relief from her arthritus for the first time. I told her to go ask her doctor about it. She reported that her doctor said that the Migun was especially good for fibromyalgia. That's when I went to the store and used their table almost every day for about 3.5 weeks. It as so great that I bought one, but they are pricey.
That is funny about the 'fish'..especially with each of you exchanging notes about WHAT fish you were cooking. haha. The even funnier thing is after reading Niko's comment about the Halibut..I dashed across the road/street and went to the same place and got myself some Halibut to cook for the next day!!! This place he & I speak of is a Marina where the fishing boats dock plus there is a fish store to buy the freshest fish anywhere.
BUT..don't ever feel jealous about me (or anyone) living on this (or any) Island..b/c there are always downsides to 'such'. Of course, 'we' - the Islanders are privy to the tranquility and feel far far away from the maddening noise, crowd, traffic, pollution etc...of the City BUT we have to accept the endless rain during the monsoon seasons. Which BTW....really really gets to a lot of people (including me-sometimes).
I originate from the Prairie provinces where there are 4 seasons..on this Island..there are 2=rain & sunshine. But, it is mostly a mild climate without the dreaded -30F temps and so I stay here.
Another thing..I read about EVCO on this site and purchased some (expensive..WHEW) cooked my halibut in it and was more than pleasantly surprised as to the delicious taste.
I had to decline on the Hypnotherapy b/c it was just NOT in my budget..a single person living on their own with just a pension to survive on. Trust me..their are NO breaks given to lower income people. Duh!!
BUT..don't ever feel jealous about me (or anyone) living on this (or any) Island..b/c there are always downsides to 'such'. Of course, 'we' - the Islanders are privy to the tranquility and feel far far away from the maddening noise, crowd, traffic, pollution etc...of the City BUT we have to accept the endless rain during the monsoon seasons. Which BTW....really really gets to a lot of people (including me-sometimes).
I originate from the Prairie provinces where there are 4 seasons..on this Island..there are 2=rain & sunshine. But, it is mostly a mild climate without the dreaded -30F temps and so I stay here.
Another thing..I read about EVCO on this site and purchased some (expensive..WHEW) cooked my halibut in it and was more than pleasantly surprised as to the delicious taste.
I had to decline on the Hypnotherapy b/c it was just NOT in my budget..a single person living on their own with just a pension to survive on. Trust me..their are NO breaks given to lower income people. Duh!!
Hi mscoach,
To REALLY condense my symptoms--they started with various aches n pains (sorta like the flu) and my Dr. was at a loss as to what could be the problem. It wasn't very long before the aches n pains became VERY painful and were constant in certain areas of my body. IE::knees, shoulders, elbows, back, feet and burning sensations in my legs and bottom of feet. Soon I had trouble concentrating, had visual problems, memory was 'touch n go' ...and ALWAYS felt extreme fatigue...yet could NOT get more than a couple hrs. sleep at a stretch. Whilst having yet another appointment with my Dr.--he happened to have a locum filling in for him and it was 'she' (the locum) who diagnosed me with having Fibromyalgia...after doing the trigger point test.
To REALLY condense my symptoms--they started with various aches n pains (sorta like the flu) and my Dr. was at a loss as to what could be the problem. It wasn't very long before the aches n pains became VERY painful and were constant in certain areas of my body. IE::knees, shoulders, elbows, back, feet and burning sensations in my legs and bottom of feet. Soon I had trouble concentrating, had visual problems, memory was 'touch n go' ...and ALWAYS felt extreme fatigue...yet could NOT get more than a couple hrs. sleep at a stretch. Whilst having yet another appointment with my Dr.--he happened to have a locum filling in for him and it was 'she' (the locum) who diagnosed me with having Fibromyalgia...after doing the trigger point test.
I am soooo jealous where you live sounds BEAUTIFUL and you both made me hungry for that fish. Niko and I were trading stories of what fish we were cooking Friday night - he made a lovely trout and I was bbq'ing a lovely whole red snapper. Thought that was funny!
Please keep me posted about your experience with the hypnotherapist. Keep in mind that there are people of less than ethical credentials in every walk of life - I could never imagine a practitioner who would tell someone that - I mean if they plant the seed with you in the beginning that you are too negative due to pain doesn't that defeat the whole purpose? Anyway I guess my point is don't stop because you ran into one holistic practitioner without vision! Keep seeking!
I'd really love to know how your progress! I wish you well oldcookie!
Please keep me posted about your experience with the hypnotherapist. Keep in mind that there are people of less than ethical credentials in every walk of life - I could never imagine a practitioner who would tell someone that - I mean if they plant the seed with you in the beginning that you are too negative due to pain doesn't that defeat the whole purpose? Anyway I guess my point is don't stop because you ran into one holistic practitioner without vision! Keep seeking!
I'd really love to know how your progress! I wish you well oldcookie!
What were your symptoms? I've had chronic pain for awhile and haven't been diagnosed?
I was thinking the same thing..might not be condusive for me to use. I just found a hypnotherapist in the phone book so will give him a call shortly and see what he has to offer me..or suggest.
I'll keep u posted.
Thank you
I'll keep u posted.
Thank you
I was 'getting' the EFT from a certified psychologist who was very much into the holistic approach for healing. Even she said that it was very difficult to re-align my chakras b/c the negative energy of my pain was of such a high level. I found that MOST frustrating.
This fish u bought at the Marina...I live right across the hwy from that Marina!!!!
I often am awoken to the sounds of the seals barking when the fishing boats come into the harbour. Especially during herring season.
Yes...GREAT energy by the ocean any so many aspects. As I type this..we are having a wicked rain/wind storm so I can hear the giant waves breaking.
I will check on the website you posted and again I thank you.
Cheers.
This fish u bought at the Marina...I live right across the hwy from that Marina!!!!
I often am awoken to the sounds of the seals barking when the fishing boats come into the harbour. Especially during herring season.
Yes...GREAT energy by the ocean any so many aspects. As I type this..we are having a wicked rain/wind storm so I can hear the giant waves breaking.
I will check on the website you posted and again I thank you.
Cheers.
HI old cookie - it was me who said I use the backnobber - it is used to do trigger point therapy on yourself - a lot of my issues are muscular - this doesn't sound like the case for you so I would not use it. You can read about it on amazon.com but based on your post - probably not for you.
Hey oldcookie,
I don't recall mentioning the Backnobber II, which a self help therapy
tool to address mainly muscle issues and to strengthen muscles that support the spine, so there's less impact on the back.
It is best to read all the info on this product, as it may not be suited
for your condition. here's a link to their brochure that I had bookmarked:
http://www.activeforever.com/flyers/Backnobber-II-User-Guide.pdf
As for EFT, using the instructions from the basic manual would probably work on minor issues,however, for more serious conditions, psychotherapy backround and advanced level EFT training are necessary.
After all Hypnotherapy would be a viable option perhaps.
Any reputable Hypnotherapist would be able to facilitate
re-programming in the subconscious, to effectively deal
with chronic pain issues, any emotional imbalances from the past
and from the day to day dealing with difficult medical conditions.
Where about do you live in Vancouver Island?
I love the energy from the island's nature and the ocean.
And the fish! I had the best halibut ever, bought it from the fish place at
the marina in Qualicum Beach.
Take care.
Niko
I don't recall mentioning the Backnobber II, which a self help therapy
tool to address mainly muscle issues and to strengthen muscles that support the spine, so there's less impact on the back.
It is best to read all the info on this product, as it may not be suited
for your condition. here's a link to their brochure that I had bookmarked:
http://www.activeforever.com/flyers/Backnobber-II-User-Guide.pdf
As for EFT, using the instructions from the basic manual would probably work on minor issues,however, for more serious conditions, psychotherapy backround and advanced level EFT training are necessary.
After all Hypnotherapy would be a viable option perhaps.
Any reputable Hypnotherapist would be able to facilitate
re-programming in the subconscious, to effectively deal
with chronic pain issues, any emotional imbalances from the past
and from the day to day dealing with difficult medical conditions.
Where about do you live in Vancouver Island?
I love the energy from the island's nature and the ocean.
And the fish! I had the best halibut ever, bought it from the fish place at
the marina in Qualicum Beach.
Take care.
Niko
I have tried the EFT with minimal results..probably b/c I can't usually concentrate too well b/c of the wretched pains.
I haven't heard of any hypno-fibro in my area (Vancouver Island). Perhaps a hypotherapist would know do you think?
It's so nice to hear/talk to someone like you who is SO together and positive..gives me hope.
I haven't heard of any hypno-fibro in my area (Vancouver Island). Perhaps a hypotherapist would know do you think?
It's so nice to hear/talk to someone like you who is SO together and positive..gives me hope.
I thank you for all your advice and will look into that Backnobber 11 you speak of. What exactly does it do for you? I've had back surgery several years ago (btw..it was a botched surgery) and have to be ever so careful. My chiropractor will no longer even touch my back and I cannot tolerate using the massage feature on my pc chair.
That's why I ask...what does the backnobber do for you.
You inquired where I live....I live on Vancouver Island B.C.
Where do you live?
I'm currently trying to find a 'gentle' massage therapist that is NOT so costly. Wish me luck on that...lol
That's why I ask...what does the backnobber do for you.
You inquired where I live....I live on Vancouver Island B.C.
Where do you live?
I'm currently trying to find a 'gentle' massage therapist that is NOT so costly. Wish me luck on that...lol
Niko - I also just ordered one of the books you recommend - the mind body prescription. I can't wait to get it.
I'm in the same boat as oldcookie in wanting the hynotherapy or behavioral cognitive therapy but I've been "on the bench" and not working steadily the last several weeks. I'm trying to deal with lifelong sleep issues and fibro and am almost 60 days free of all my pain meds, 3 weeks free of sleep meds and trying to improve my sleep habits. I'd love any tips you have as well.
I'm a work in progress and trying to become as educated as possible on alternate ways to manage pain.
As always you are wonderful - thanks for all your advice!
I'm in the same boat as oldcookie in wanting the hynotherapy or behavioral cognitive therapy but I've been "on the bench" and not working steadily the last several weeks. I'm trying to deal with lifelong sleep issues and fibro and am almost 60 days free of all my pain meds, 3 weeks free of sleep meds and trying to improve my sleep habits. I'd love any tips you have as well.
I'm a work in progress and trying to become as educated as possible on alternate ways to manage pain.
As always you are wonderful - thanks for all your advice!
Never had a dx- Told : mystery, psychosomatic, A/I condition, idiopathic etc etc with excruciating pains, anxiety, apnea, shakes etc. Jumped off the medical merry-go-round as soon as I realized my life was going downhillin "their" hands. That was many moons ago.
Seems like another life! lol!
Took matters in my own hands and never looked back.
Now, I can actually treat the very same ones who couldn't do anything for me then, for some of their serious issues. Heh, heh!
I guess, in a way, we're all responsible, for how things are in our society.
It's good to be knowledgeable and proactive though, as this may greatly influence the course of one's recovery and improvement.
Bundled sessions (6-12 is what I would recommend for serious conditions) should be a lot less per session. Well worth it, if one can afford it.
I'll think about this. Maybe there's something I can come up with, for people that have limited financial means.
Where about do you live, by the way?
Seems like another life! lol!
Took matters in my own hands and never looked back.
Now, I can actually treat the very same ones who couldn't do anything for me then, for some of their serious issues. Heh, heh!
I guess, in a way, we're all responsible, for how things are in our society.
It's good to be knowledgeable and proactive though, as this may greatly influence the course of one's recovery and improvement.
Bundled sessions (6-12 is what I would recommend for serious conditions) should be a lot less per session. Well worth it, if one can afford it.
I'll think about this. Maybe there's something I can come up with, for people that have limited financial means.
Where about do you live, by the way?
get the "Backnobber II" from amazon, it's like 25 bucks or something and it's a big S hooky thing so you can reach any point ANYWHERE on your body - this this is working very well for me.
Most interesting...I had NOT thought of hypnotherapy and will certainly look into it now. I, too, am fighting with the thoughts of giving up my power to the medical professionals...as any med I've been given makes me feel worse - but in a different way. The Cymbalta & Lyrica was the worst experience ever....might not have been any pain...but there was NO brain activity going on either. That was most frightening experience for me.
Again I thank you for your suggestions & input. There is no coverage for holistic approach where I live and just 1 session is $125.00...but it sounds (from you) that it might well be worth looking into.
How long have you had FM?
Again I thank you for your suggestions & input. There is no coverage for holistic approach where I live and just 1 session is $125.00...but it sounds (from you) that it might well be worth looking into.
How long have you had FM?
Thanks you for your input. I could not tolerate Cymbalta or Lyrica either..put me in a catatonic state rendering me totally useless..both brain & body activity. I have a very low tolerance for meds anyway so it's a constant struggle trying to find SOMETHING that will help. I've been trying your trigger point method on myself and find relief with that but only on my shoulders. If I could ONLY reach my back..hmm
Hi! Since my name came up, I might as well respond.
Just for the record Iwilldothis, I am a male like my profile states.
(No offense taken, no apology needed either) Thanks for your kind words.
Some members because of sexual orientation and various other reasons, list their gender differently, which really is a non issue, unless it pertains to gender specific biology in regards to medical conditions.
O.K. On to the question here.
In addition to the info from my older post from the aforementioned link,
one under-explored area of therapy for Fibro and similar conditions is Hypnotherapy.
There are some Hypno-Fibro programs in North America with some documented positive results- showing much greater effectiveness than any prescribed medicines.
It addresses motivation (which is usually lacking and for obvious reasons),
sleep quality improvement, pain management, stress reduction and emotional re-balancing to name some of the main elements.
I have incorporated EFT (Emotional Freedom Techniques), Energy Spiritual Psychotherapy, Holistic Allergy/Sensitivity/Intolerance Elimination, Reiki
along with a modified Hypnotherapy approach and Nutritional counseling.
The results are commensurate with the openness and willingness to actively participate in one's own health matters.
It has been an interesting endeavor, with constant and never ending improvement as my objective.
So, should you be open to the possibility of Hypnotherapy, consider
seeking a reputable hypnotherapist in your area to set up a comprehensive
plan, which would involve a bundle of sessions (10-12 spread over 3-4 months) and booster sessions every 6 months after the bundle.
Regression therapy(including child,birth and past lives) has yielded good results as well. One case with complete remission! This was a first for me.
What helped me get out of Limbo Land with my health issues, was my refusal to give up power to Doctors and medical labels - as I mentioned in some previous posts- and being VERY proactive. Also becoming friends with pain and suffering is a tough enough challenge, but it sure makes one stronger at the end. I haven't taken even a single aspirin in years!
Should you need more details or other holistic suggestions, post again or
pm me directly.
Take care,
Niko
Just for the record Iwilldothis, I am a male like my profile states.
(No offense taken, no apology needed either) Thanks for your kind words.
Some members because of sexual orientation and various other reasons, list their gender differently, which really is a non issue, unless it pertains to gender specific biology in regards to medical conditions.
O.K. On to the question here.
In addition to the info from my older post from the aforementioned link,
one under-explored area of therapy for Fibro and similar conditions is Hypnotherapy.
There are some Hypno-Fibro programs in North America with some documented positive results- showing much greater effectiveness than any prescribed medicines.
It addresses motivation (which is usually lacking and for obvious reasons),
sleep quality improvement, pain management, stress reduction and emotional re-balancing to name some of the main elements.
I have incorporated EFT (Emotional Freedom Techniques), Energy Spiritual Psychotherapy, Holistic Allergy/Sensitivity/Intolerance Elimination, Reiki
along with a modified Hypnotherapy approach and Nutritional counseling.
The results are commensurate with the openness and willingness to actively participate in one's own health matters.
It has been an interesting endeavor, with constant and never ending improvement as my objective.
So, should you be open to the possibility of Hypnotherapy, consider
seeking a reputable hypnotherapist in your area to set up a comprehensive
plan, which would involve a bundle of sessions (10-12 spread over 3-4 months) and booster sessions every 6 months after the bundle.
Regression therapy(including child,birth and past lives) has yielded good results as well. One case with complete remission! This was a first for me.
What helped me get out of Limbo Land with my health issues, was my refusal to give up power to Doctors and medical labels - as I mentioned in some previous posts- and being VERY proactive. Also becoming friends with pain and suffering is a tough enough challenge, but it sure makes one stronger at the end. I haven't taken even a single aspirin in years!
Should you need more details or other holistic suggestions, post again or
pm me directly.
Take care,
Niko
That other member's name was Nikodicreta - sorry I mispelled in my earlier post. She posted on some other stuff today - seek her out, she is very very helpful.
Here is a prior link for what username Nikodicretia posted in response to my searching for alternative methods - she is a wealth of knowledge and I'm sure if you sent her a private message she would be glad to point you in the right direction.
http://www.medhelp.org/posts/Fibromyalgia/IWillDoThis-To-help-Alleviate-Fibro-Symptoms/show/1677486#post_7656976
http://www.medhelp.org/posts/Fibromyalgia/IWillDoThis-To-help-Alleviate-Fibro-Symptoms/show/1677486#post_7656976
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