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Show ALL Forums  > Health Wellness  > Fibromyalgia      Home login  
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 marita_b
Joined: 6/15/2005
Msg: 51
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FibromyalgiaPage 3 of 8    (1, 2, 3, 4, 5, 6, 7, 8)
the one thing to remember is that this disease or disorder is different in every person, both in degrees and in location of the suffering,...and although trying everything possible is a good thing, but remembering that what might be the answer for one person may not be the panacea for another,....

its the people who tell you all that you have to do is x,.... y,.... or z,... and you will be cured, that add to the frustration when this does not come to pass,.....

and I think the thing that brings many of us down is that so many people telling us that we are the cause of our own disease,.....and that if we were better people we wouldn't have so many aches and pains,....because clearly it's something we are doing wrong,....

well that's not the case,....and the one thing that we (or at least I )try very hard to work on, is the guilt,.....and the many doctors that still believe if they can't find it ,...you don't have it,....
 Ideoform
Joined: 9/23/2007
Msg: 52
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Fibromyalgia
Posted: 1/20/2009 8:37:47 PM
Check out this other thread on Fibromyalgia:
http://forums.plentyoffish.com/datingPosts7467114.aspx

I don't want to re-post here, but you can read my story on post number 72.

Here are some others to look through:
http://forums.plentyoffish.com/datingPosts3815329.aspx
http://forums.plentyoffish.com/datingPosts2994860.aspx
http://forums.plentyoffish.com/datingPosts5016125.aspx
http://forums.plentyoffish.com/datingPosts2147319.aspx

For pain:
Try homeopathic Rhus tox 6C
Take 3x per day 1300 mg Glucosimine, Chondroitin, with MSM
L glutamine
Acupuncture & Chinese medicine
Arnica gel on painful areas, or tablets.
Magnets (bracelets, pads, shoe inserts, etc.)

For better sleep:
Take a bath with Epsom Salts in it before bed. 2-3 cups per bath.
Take a Melatonin.
If you have restless leg problems have your iron blood levels checked. Low iron can cause sleep problems.

For general better health:
Evening Primrose Oil
Omega 3 fatty acids (flax oil has this)
Vitamin B6 (helps with the brain fog)
Magnesium (helps prevent muscle cramping, helps with sleeping)
Vitamin B12 (helps with symptoms similar to anemia, and with brain fog)
The spices found in curry help, like Turmeric.

Yeast infections or candidia can be a symptons of a Hidden auto-immune desease.
Avoid products made with yeast, including Brewer's yeast.
Get your Doctor to give you a round of Difulcan and then Nystatin for a longer time.

Avoiding these things is mentioned in many places on these threads:
------------------------------------------------------------------------------------------
Aspartame (artificial sweeteners) can cause migranes
Sugar causes lethargy and brain fog
Caffeen
Gluten (in all wheat products)
Casein (in all dairy products except eggs)
Nitrites (in processed meats. You can find nitrate-free meats in groceries now.)
MSG (Monosodium Glutamate) can cause migranes
Artificial preservatives (salt, vitamin E, and citric acid are ok)
Artificial colorings cause muscle spasms and headaches
 Ideoform
Joined: 9/23/2007
Msg: 53
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Fibromyalgia
Posted: 1/20/2009 8:40:42 PM
Oh, and take some vitamin D and/or go out in the sun about 15 minutes per day. This helps produce hormones that help you to sleep better.

For exercise, swimming is a good choice since it might not trigger the Fibro as much because it is low-impact. Then find a sauna or whirlpool to soak in. The heat might kill any lingering illnesses that your immune system can't fight off well enough--just like a high fever does.
 marita_b
Joined: 6/15/2005
Msg: 54
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Fibromyalgia
Posted: 1/22/2009 9:39:54 AM

Each day is different and even how I handle the pain each day can vary; depending on the level, I'm more angry than angelic. It's not like I can point to something visible, and say "look, see, THIS hurts" If Fibro had a bruise when it flared...we'd be purple people,...


HEAR >>HEAR !!!!!!

I dare say this is the one single thing we ALL have in common,....

Personally I can't remember a day absolutely pain free,...
I have no idea what that is like but talking about it all the time bores even me,.....

but isn't it amazing just how much we can endure,....I think personally,...I'd do well under torture,....

so when someone asks me in passing "how are you" and I answer "moderately average"
They usually pause and smile at such a creative answer,...and I'm probably telling the truth.

occasionally I pull out the "shitty but thank you for asking"
it usually elicits the same response,.....and I'm probably, still,....telling the truth.
 wicked smile
Joined: 6/17/2006
Msg: 55
Fibromyalgia
Posted: 1/24/2009 2:31:01 AM
Chronic Fatigue syndrome, Fibromyalgia and Repetitive Strain all share the same pathology pattern and often depends on what your MD knows as to what you will be diagnosed with.
I helped with a medical symposium based on these and their diffential diagnosis. The name of the symposium was: Which came 1st the Chicken or the Egg?
In general all pointed to elevated inflamation, primarly from some over taxing physical stress/strain.
These included Whiplash injuries, occupational biomechanic and ergonomics, over-training in athletics.
Each persons physiology and potential allergens would aggravate the underlying cause. And therefore, so many ways of treating. Diet, anti-inflamitory measure and decreased physical stress seem to be the best combination.
 GoDiveNow-
Joined: 6/14/2007
Msg: 56
Fibromyalgia
Posted: 1/24/2009 10:08:25 AM
I have perused this forum, and did find some references to massage therapy. I'd like to add a caution on the type of therapy used as well as make an additional suggestion. Following, some experiences I've had treating FMS & CFS clients. I discovered I one of my cousins suffers with FMS & CFS as well as myoencephalitis. He'd had this for years by the time I was able to offer this advice and his wife indicated he was unfortunately not willing to try anything else.....he'd been through the mill so to speak and gave up.

I've been a massage therapist for 11 years now. early in my career I treated a friend's friend who suffered with FMS and CFS. At the time, and not knowing what I later learned at a seminar given my Dr Leon Chaitow on FMS & Muscle Pain (book by this title published 1995-I don't know if he's updated since then) other trainings throughout the years. I provided a "deep" massage at the woman's request - fortunately my deep work is done from the less is more philosophy. Despite attention to her responses as I worked she reported she was in more pain following her session.

Subsequently, I've worked on others with lighter pressure work successufully. And a short while later came across another client requesting deep work for her FMS - moderating her treatment fortunately it did not cause her pain.

I agree wholeheartedly with the statements made to the effect, that each of our bodies are different and the condition does not present exactly what someone elses does. There are the typical points which will indicate FMS

About a year later I began studying Cranio Sacral Therapy with the Upledger Insitute. I have since treated clients presenting FMS/CFS with Cranio Sacral Therapy. This is a very relaxing, balancing body work which releases tension/paind gently - there is no chance of a client experiencing pain during or following the therapy.

You can read more about CST at the Upledger site as well as find a trained therapist using the site or loging on directly to IAHP.com. Since the institute teaches many other classes, there is a key which indicates the classes that each practitioner listed has taken. Of course possibly the more the better, but I would suggest looking for Minimun CSI & CSII (after that SERI & SERII) - in referring clients to this site for friends etc...I suggest they interview the therapist starting by asking them what type of massage do they do or specialize in....if CST isn't one of the first two modalities - you may want to look further if you have a choice. This work is taught through out the US, in Canada and other countries. My friends mother received follow up treatments for other issues in Denmark.

Hope this helps those of you that have to deal with this disorder.
 returntosenderplease
Joined: 12/30/2009
Msg: 58
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Fibromyalgia
Posted: 1/6/2010 8:16:51 PM
JUST WRITE ME IF YOU ARE INTERESTED I KNOW A LOT OF REMEDIES TOO MANY TO WRITE
 Ideoform
Joined: 9/23/2007
Msg: 59
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History
Fibromyalgia
Posted: 1/7/2010 12:13:04 PM
The medical recommendations for Fibromyalgia, IBS, and Chron's disease have been updated to include getting tested for Celiac disease, since Celiac is underdiagnosed in this country, and Celiac can mimic the symptoms of these diseases. Many Celiac patients have been previously diagnosed with one of these diseases before getting the Celiac diagnosis confirmed. There is a genetic test, a blood test and a biopsy available for getting a diagnosis. Patients can also adopt a strict gluten-free protocol (casein-free is also recommended during the first year) with care that no cross-contamination occurs for a few months and see if their symptoms improve. However, the gluten-free diet is often not implemented correctly, so it is recommended that you go to a clinic, support group or website that helps Celiac patients follow this very strict protocol. (It is not a calorie-restricted diet, though.)

"Are You the One?"
http://celiac.org/downloads/FibroMag%20celiac%20story%20by%20EM%2007.pdf

http://www.thepatientconnections.com/blog.asp?uid=46
 1bellanella
Joined: 1/24/2010
Msg: 60
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History
Fibromyalgia
Posted: 6/28/2011 8:01:30 PM
I would recommend looking into Candidiasis. Fibro can be one of the symptoms along with a whole host of other things.
 faeriefly
Joined: 7/20/2011
Msg: 61
Fibromyalgia
Posted: 7/24/2011 7:11:56 AM
I just joined plentyoffish and I already have another web forum for Fibromyalgia support... What I'm wondering is, how/when do you drop the FM/CFS bomb on someone you interested in? Do you wait until you meet? Have been on 1, 2, 3 dates? Tell them before? Should I post it on my profile?

I'm not employed right now, partly because the Fibro is so disabling and I'm in the middle of an SSDI case, and partly because I'm back in school full time to finish my teaching degree. (Gotta do something post-divorce to support the little squirt, right)?

I just have no idea how to enter the dating pool again with or without Fibro... especially with it, and I don't know how many of these guys that talk about hunting and fishing and tubing in the great out doors would be at all interested in someone with FM/CFS.

Help please?
 Rainiqui
Joined: 10/4/2010
Msg: 62
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Fibromyalgia
Posted: 8/14/2011 3:08:10 PM

There is no such thing as Fibromyalgia,


You may want to consider prefacing a statement such as this one with "In my opinion,".

I believe that when one posts such a blatantly jejune declarative statement as fact, it may seriously undermine what little, if any, credibility they have.

IN MY OPINION, there are countless medical professionals (myself being one), who would disagree with your "statement of fact".
 Rainiqui
Joined: 10/4/2010
Msg: 63
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History
Fibromyalgia
Posted: 8/14/2011 8:44:07 PM
khashi23 - No problem
 rosylyn
Joined: 8/13/2011
Msg: 64
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History
Fibromyalgia
Posted: 9/3/2011 2:31:09 PM
hi i suffer with fibromyagia at the high level at the moment it has ruined my life. my ex partner has just split from me as my meds have made me put some weight on and has over took my life. i was a independent women who brought three kids up on her own and now i feel like a 80year old women with the memory loss confusion . the depression is horrible and the stress makes it worse. very hard to stay calm.also you look OK on the out side but inside you are suffering. i hope your friend has not got it as bad as me..all i can say is be surrportive as you can.
 arwen52
Joined: 3/13/2008
Msg: 65
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Fibromyalgia
Posted: 10/2/2011 8:20:31 PM
I am a massage therapist who has a fair amount of experience with clients with FM. I also used to teach MTs how to work with clients with FM. Touch Research Institute has shown that 1/2 hour *gentle* massage 2x/week can reduce the severity of symptoms. In Russian massage (in which I was trained - it's used in hospitals and clinics and based on research) we do 20-30 minutes of very gentle massage 2-3x / week.

There are FM support groups. Have them check it out. They need to make sure they get regular sleep and regular, gentle exercise, preferably every day. They need to do everything they can to support their health - get rid of tobacco, keep any alcohol and caffeine to a minimum, eat well, manage the stress levels in their lives.

Good luck to your friend.
 chemosaby
Joined: 1/1/2011
Msg: 66
Fibromyalgia
Posted: 12/26/2011 5:42:54 PM
Fibro is an autoimmune condition that is a reaction to vaccines that cripple your immune system. Running to doctors won't be much help. They don't understand it much given they refuse to blame vaccines, and since they are nothing but glorified pharmacist nowadays, you'll leave with a vioxx like prescription that could maim or kill.
 Northern^Lady
Joined: 4/19/2007
Msg: 67
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History
Fibromyalgia
Posted: 7/15/2012 7:05:43 PM
I normally don't get involved with these topics but I can not in good conscience stand by.
I have had fibro for many, many years. I will agree in so far as, cutting sugar and gluten out of your diet is not a bad idea, but come on cut out sugar and flour for two months and it will go away...which is basically what you are telling this person.
I suggest rest, a balanced diet, and exercise. {yoga, walking, swimming}
I also suggest going to specialists, naturopaths, and your doctor on a regular basis.
Try to keep stress down as much as possible.
Some medication may be required. That is up to the attending physician.
If you and your doctor don't see eye to eye ask for a second opinion from another doctor.
Look for support groups,{there are plenty on facebook}, don't over do an activity and learn to say no
if you don't feel up to it, even if you had promised.
Just some common sense from someone who is walking the walk.
 Northern^Lady
Joined: 4/19/2007
Msg: 68
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History
Fibromyalgia
Posted: 7/15/2012 7:09:09 PM
Very good advice. :-)
I will mention though and this seems to be so overlooked.
Fibromyalgia is so much more than pain.
I could list some of it off but look it up.
It is interesting and it justifies how you are feeling in different ways.
Fibro Fog is a good one to look up. No, you really aren't loosing your mind.
A good magazine is, "The Fibromyalgia Network". You can find it on the web.

Best of luck.
 Northern^Lady
Joined: 4/19/2007
Msg: 69
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Fibromyalgia
Posted: 7/15/2012 7:11:12 PM
What kind of doctors have you been dealing with?
 marita_b
Joined: 6/15/2005
Msg: 70
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History
Fibromyalgia
Posted: 7/24/2012 12:48:59 PM
Fibro is an autoimmune condition that is a reaction to vaccines that cripple your immune system.****

WOW!!!! you should inform the media chemosaby,..... because no definitive known cause has as yet been determined by the legions of medical proffessionals who are looking into this,....

I haven't added much to this thread for a couple of years now but this kind of blatant hubris needs to be responded to,....

In fact nothing new has been discovered in either the diagnostic or treatment area of this disorder,....
The only way a positive diagnosis can be made is to determine what other ailments, disorders or diseases can be defined by a person's presentation of signs and symptoms,....because there is such a huge laundry list of potential S&S that all fall under this disorder, fibromyalgia,.....you can line up 20 confirmed fibro patients, and no two will be the same both in the severity of their pain and in what body parts are affected.....

over the last 7 pages there are many good suggestions and a few like yours that are outright dangerous,.....and often there is also a huge success with placebos,..

to those of you that have been cured,...consider yourself lucky that you didn't have fibro,....because there is NO CURE YET,...
there is and only to those of you who are lucky,.... a way to lessen the severity,....
what is important to know is that what might help one person may have no effect or even harm another,....

So I who have been suffering for many many years now,....every single day, have tried it all,....and have found myself beating up on myself because what so obviously helped someone did nothing at all for me,....
haven't we all had an aunt or parent who seem to complain all the time about this that or the other ache or pain? I had,...my favorite aunt in fact,...
oh yes,....there is some thought that there may be a hereditary component to this thing,....(but even this is only a guess so far)

The biggest thing that all of us have in common is depression,.....and feeling a failure or an outright hypochondriac,....because after all for us to feel the way we do we must mean we are too sensitive to the day to day aches and pains we all have,....R I G H T ?,...... W R O N G!!

this is what we told ourselves before we even knew there was such a thing as fibro,...After all what disease can affect our hair texture and our digestive tract, your cognitive ability,...the way in which we sleep or rather don't sleep and body aches that seem to jump from joint to joint at will,....and the list goes on,....

well it turns out quite a few things,....and all of those have to be ruled out first,....some have an outright cure, (lime disease)....some don't,... some are even life threatening,...and some are yours for life,....

Fibromyalgia is a degenerative disorder that has,.... NO CURE,....YET!
If you have fibro,...then you will have it for life,.....so far,....no one wishes this were not the case more than I do,....

So on behalf of all who are are suffering and want more information,....I say thank you, to all of you who have offered suggestions as to what may help given certain symptoms,....or what doctor, web site, medicinal/non medicinal medication or procedure ,...etc, etc, etc,....

BUT,.....to all of you who KNOW so much more than the medical community or even us dumb patients,.....

I say keep your wisdom to yourself,.....because you hurt far more than you help,......
 1bellanella
Joined: 1/24/2010
Msg: 71
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History
Fibromyalgia
Posted: 7/27/2012 12:02:46 PM
QueenSaru,
You might want to look for free/cheap classes in your area. I googled it after looking at your profile and was able to come up with some. You might also want to look for groups on meetup.com. We have some in my area that are active and completely free.
 melodyof_k
Joined: 5/2/2012
Msg: 72
Fibromyalgia
Posted: 8/10/2012 12:46:30 AM
sometimes all of the above symtoms can be (I am not saying it all is) but can be actual Lyme disease.
Mention to your dr that you would like to be tested for lyme. and that you want the blood work sent to IGENIX lab.
that is what happened to me.
I had so many of the symptoms you describe above.
I found out I have lyme which is very serious....but there are ways to cure it.
 melodyof_k
Joined: 5/2/2012
Msg: 73
Fibromyalgia
Posted: 8/10/2012 12:51:50 AM
fibromyalgis, chronic fatique, insomnia, depression,
confussion, loosing words, muscle and joint pain....
it can take years to get a diagnosis. Tons of medications given.

I finally found a dr who taught me that food is medicine.
how we can heal ourselves with the proper foods.

and the proper diagnosis.
all the fatigue and pain and memory loss I suffered from was actually due to lyme disease which I
am now being treated for.

whatever you do have....look up the proper nutritional ways to help heal your symptoms
unless you are lucky enough to have a doctor who can tell you the proper way to eat for your specific condition.

lets get well.
 Peppermint_Petunias
Joined: 3/30/2012
Msg: 74
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History
Fibromyalgia
Posted: 8/10/2012 4:43:48 AM

no definitive known cause has as yet been determined by the legions of medical proffessionals who are looking into this,....

^^^^^^^^^^^^^^^^^^^^^^^^^
Exactly and no one listens because the doc is giving most of them pain killers and other crap/general label for the condition.


fibromyalgis, chronic fatique, insomnia, depression,
confussion, loosing words, muscle and joint pain....
it can take years to get a diagnosis. Tons of medications given.

I finally found a dr who taught me that food is medicine.
how we can heal ourselves with the proper foods.

and the proper diagnosis.
all the fatigue and pain and memory loss I suffered from was actually due to lyme disease which I
am now being treated for.

^^^^^^^^^^^^^^^^Fabulous post

RULE out an infection/virus.
Massive doses of olive leaf extract, garlic and ginger will fight a virus, Even eliminate if used long enough.

Rule out neurological issues ( could be from a lack of minerals) Magnesium being one of the top minerals.
No, a wal mart magnesium pill isn't going to get enough in you. It does not absorb well enough.

Rule out even malaria/lyme..Who checks for that anymore?OK one did..upstairs

I would be my own advocate and try many things that are first starting with real foods and no pesticides used in the home and on the skin. Even lotions not organic and plant based.
Checking for heavy metals in the body that are not in the normal range.

GET OFF any artificial sweeteners.
No sugar No sugar No sugar
Little animal protein and only grass fed and antibiotic free.
No commercially prepared foods.

Get 3-10 doctors to check you.
Get a nutritionalist.
Get lymphatic massage and exercise.

Many have words of wisdom have been posted..Its up to us to fight for our health.



Check your inflammation score (C reative protien) and get on an anti inflammatory lifestyle.

FOOD is the answer to many things wrong with us.
 Synergywu
Joined: 2/19/2012
Msg: 75
Fibromyalgia
Posted: 8/13/2012 1:31:15 AM
This is all very good information in the posts - but I have not seen much discussion about dating, or the dramatic change in lifestyle this condition can cause. I live with muscle and joint pain, was very athletic, but now my activities are very limited - it is difficult to accept - but I keep moving and holding on to my career thru the pain - hoping to find a solution.

In the mean time, are you all finding someone compatible to spend your life with, to care about, and create a supportive relationship? I am finding this to be a challenge.
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