Fibromyalgia

[peepsnbunnies]

Hi Friends -
I do not have FM. I am VERY Thankful for that! My hat is off to all of you folks that have to struggle and deal with such a MEAN disease like this everyday. I can not even imagine what you go through!

The reason I am writing is because just today a dear friend of mine forwarded me an email discussing this very subject - FM, and what causes it. I read the email and for some reason did not delete it. At that time, I had no idea I would be reading all of these posts about FM and the misery it causes.

Anyway, I would like to show this email to you guys, but I do not know how to put it on here. (I wish I was not so computer illiterate!) It is pretty long or I would type it out. But if someone knows how to post it up here, let me know and I will email it to you. I don't know if it has been verified by snopes or not, but it is a very interesting article and may possibly help someone.

Lisa

 

[Enchanted Sunrise Farms]

Hi Lisa - i just pmed you with my personal email address. If you send the article to me, i will post it on this thread. Thank you for thinking about it.

Colleen

 

[Jena]

Hi ,

If you go to the mail and highlight the bit you want to reproduce here, right click on the highlighted area and copy it there, you can then open a response here and again right click on the response page and paste it in.

That will work.

Jena.

 

[peepsnbunnies]

Thanks Jena, I emailed it to Colleen, she will probly post it. Hope it helps.

Lisa

 

[Enchanted Sunrise Farms]

Hi All,

i'm not going to post Lisa's forwarded article, as it is very very long. But i did a quick search on Snopes, and it seems to be an article that is going around regarding the dangers of aspartame or artificial sweeteners. i read about this many years ago, how toxic they can be, especially when they become overheated, and so now do not drink diet sodas. Unfortunately, i still have fibro. However, since it might be a contributing factor to someone's illness, here is the link to the Snopes investigation:

http://www.snopes.com/medical/toxins/aspartame.asp

Thanks Lisa for this information. It just may help someone.

Colleen

 

[skirbo]

I'm so glad I found this thread. About ten years ago I was diagnosed with Hashimoto's Autoimmune Thyroiditis. I already had osteoarthritis in some joints due to weight and injuries. Two years after the thyroid problem started, nothing had resolved itself fatigue or weight wise and I was in a whole lot of pain as I am sure you will all understand. The fibro fog has been painful and embarrassing for me and is the worst when I'm under the most stress (which I am right now, my stress is higher than it has ever been actually).

Right now I have the thyroid problem, fibro, arthritis, PCOS, high blood pressure and diabetes. I take Lyrica and it controls my fibro, it really does. I take Mobic for the arthritis (which I just started after three years on Celebrex, which lost effectiveness), Synthroid for the thyroid, metformin for the diabetes, lisinopril and amlodipine for the high blood pressure (and sometimes hydrochlorot), Cymbalta recently added back in for the depression and sleep problems, and multivitamins/potassium supplement when I can remember it. I also take flexeril as needed for muscle pain.

I could give a rat's fanny less about side effects. If it works, I'll use it. I've changed a lot about my life and given up a lot. If I'm going to live every day in extreme pain (rather than mere tiredness and flu achey feeling), day in and day out with no end in sight then I can't really manage to get out of bed. Been there, done that last time I had no insurance. The thought that I may very well lose my job and therefore my insurance in a few weeks terrifies me. I can't bear the thought of being in uncontrolled pain again, I just don't want to go there.

I truly believe that one day research will prove what we are calling fibromyalgia now is actually a dozen or more different but related syndromes. That's why it's so different for everyone.

Hang in there,
Sarah

 

[Ferngully]

Quote:
I had to laugh at that quote, not that it is funny for us sufferers, but that a doctor finally admitted to someone what most drugs actually do.

Let me preface this message by saying I am not a doctor, do not play one on television, and I don't think I have slept in that one hotel chain in the television commercial. These are just some things I have learned in the last 20+ years of research and treatment.

So, so many medications do not work the way that people assume that they do. As in pain medications, all they do is alter the mind's perception of the pain in a normal person, unless it inflammatory in nature and you are taking a med for inflammation(for clarification). With FMS we have an overabundace of pain perception so for some the pain meds seem to have no effect.

Educate yourself on all the various treatments both conventional and what would be unconventional to some.

Educate yourself on the medications that are prescribed for you, and be sure to check for drug interactions between those and any dietary supplements, holistic meds you are taking or plan on trying, also look at food interactions. I know pharmacies give you a cute little note when you get a new prescription about your med, but it isn't all inclusive and new "discoveries" are made about interactions daily. We are used to having to research FMS, research your drugs and treatments as well.

I see that heat, hot baths, hot showers seem to help alot of us, for awhile.

Some say light exercise, ("working out" never worked for me, paid for it so bad it wasn't funny). There are different perceptions of what light exercise is ( I think some professionals believe we sit on our bums or in the bed 24/7). For me, running after 2 kids (with various special needs and homeschooling), 6 dogs, 2 cats, a turtle, and chickens everyday, manage my home and acres as well as my father's is not light but moderate exercise. No, sometimes the laundry isn't finished all in one day, or the floor isn't scrubbed daily as it should be but it will get done in time.

For some, try a kids yoga exercise program, it is light stretching in nature and not real difficult (one geared towards awkward, uncoordinated preschoolers that is). Just make sure you have someone to help you off the floor afterwards

Diet, that is a controversial one. Some find reducing processed foods, or protein content, or components of certain foods helps. This too is very individual to each person and no two are alike.

Try to reduce stress, sometimes easier said than done. If you are going through an especially difficult time in your life do not be afraid to approach your doctor and let them know, hey it is a little more stressful than normal. Perhaps they can prescribe an antianxiety med for a short period of time.

Research melatonin as a sleep aid, though it should not be taken for long periods of time, it may help someone get a bit of rest. It is over the counter as a dietary supplement, and works like benadryl to help you fall asleep and for some enables a nice REM sleep. Safe for even children to take. Be mindful however if you are taking a prescription sleep aid. This is just a suggestion for those who do not have the option of prescription sleep medications.

Be observant at work and at home of body positioning, as in the height of the seat of chair as well as the firmness of the seat, use a footstool to elevate the legs just a bit if needed to release some of the pressure on the back of the legs/knees and the nerves associated in them. Try various height levels as well as firmness. And don't forget to take a break from sitting. If you must stand for long periods of time try to find a way to sneak a seat once in awhile. I know sometimes easier said than done in some professions. Short of telling our employers we have a problem and risk loosing our jobs, as the ADA can help, but then you get into that whole mess of doctors documentation and employers not being very understanding or helpful, and finding ways of replacing you for other reasons. Heard too many stories of that one. For many changing professions is not an option, especially in this economy.

Know your limitations, learn to say NO. We by nature tend to over do on our good days and pay for it later.

Substance protein P is one component that researchers are investigating at this time, they have found that alot of people with FMS have an over abundance of this message carrier in their body. Others do not. Hence, the difficulty in treatment for many.They are trying to find a drug to work on substance P but in the mean time, antiseizure meds, antidepressants, and muscle relaxants are the best they have to offer us. Yes, I believe that there is such a huge diversity in the cause, effects of this illness that it has greatly slowed progression in research and treatment. "They" just aren't sure of what it is they are looking for and since it isn't life threatening it isn't on the top list for research.

So many people have the same symptoms and the best they can do is lump all together in one group under FMS (for those lucky enough to be diagnosed). In time they will finally be able to develop subsets, utilizing blood work and imaging and be able to treat according to each individuals cause, but I feel that is long time off.

There are many legitimate groups on the web you can join for support, and to get information from. Just remember that there are also alot of websites selling "snake oil" for treatment of FMS, like so many other illnesses. Research the ingredients, look for other unbiased research to back up the websites claim, and use your best judgement.

If you choose a holistic, natural, or dietary supplement approach to treatment I advise seeking the assistance of a professional in that field, as many of the "natural" things you can take, can be as dangerous as prescription medications if you do not understand how they effect the entire body and at what doseage it becomes unsafe. Especially if you are using prescription medications in conjunction with these.

to all who have found some relief in their daily lives and more to those who are still struggling to find it, or who are just starting this journey. It isn't easy, be patient, know that finding what works for you will take time, but don't let the doctors dismiss you. Find a doctor who will listen. Rheumatologists seem to be the ones who are listening at this time and seem to be reading the research articles, and conferences that are sent to them. Since FMS mimics so many other illnesses, it needs to be taken seriously. And no, blood tests for other illnesses CAN come back negative that day and a year later can be positive, so stay on top of your healthcare.

 

[Jena]

Thank you for your wisdom, all good points.

Also very interesting to read about the aspartame,

I have never been able to take anything that contains this stuff.

Soft drinks mainly here are stuffed full of aspartame, and I have never been able to drink them. I get an instant headache and severe bowel problems including cramps and the obvious results.

I am fine with pure fruit juices thank God, and so my diet has been shaped by my reactions. Any kind of sugar substitute seems to have the same effect on me.

Thank God my father taught me at a very early age to cook good honest wholesome food...lol... economy has led to me sticking to that really. I love natural foods. At bad times I can't eat processed (supermarket) cheese or hams or other meats. I have built a network of shops I can visit and still buy farm produced foods, in small quantities due to cost but hey!!!

I never buy the fashion foods. To me a flavoured yogurt is to cut up my own fruit and pour natural yogurt over it. I do like fancy things now and again, but I do not make a habit of these things. Until about 5 years ago I had never bought a Burger that I had not made myself. lol... my son was amazed that I had my first Mc Donald's meal at 50. I have tried a few since then, but not often. lol...

I also continue to exercise. I can't walk as far as I used to but I do short bursts when I can, and I ride a bicycle,weather allowing. I gave up on Gym membership due to acute pain recently, but I do still keep as active as possible. I went mainly for the water therapies there, and the treadmill.

I keep my medication here, I will take the pain relief if I really need it, but I am not fooled and even for the arthritis I don't feel it helps much, what all the meds do is allow me to sleep when it all becomes too much, at least for a short time, and then I cope again.

I feel for each one of you. and it makes a difference for me to get up in the morning, struggling to get moving and carrying out every day tasks, to know that I am not alone and throughout the day as the clock moves around the world there are other people, I know a little, that are going through exactly the same things and that (most important) they UNDERSTAND.

Thank you all so much.

Jena. xx

 

[HennysMom]

Very good points Ferngully - as no one thing works for all FM sufferers

however certain tests are a standard that do seem to go hand in hand for EVERY FM sufferer: get your potassium, magnesium, Vitamin D, and Vitamin K's checked. They all work muscles and lack in any of those areas are going to affect FM patients much worse. I have some of the best doctors as I said that work in combination with each other for Fibro sufferers (Neurologist, Rhumy and my Endo all work together and separately for Fibro patients) - and my GP works with all 3 of them to help treat me as well, but I also have many other conditions, not just FM.

Know your limits - know when to say no, its so very important. Once you over-do it, thats it, you're done for and there is no going back. Its hard to learn that, but you have to.

Get a Memory Foam Mattress - like a Tempurpedic kind - you can make your own Tempurpedic Matress for less than $800.00 in a Queen Size that is JUST LIKE the $6,000.00 name brand mattress! I know - I have one and made it myself all from Walmart and Overstock.com. Hubby and I wouldn't be able to sleep without it - my body just cannot take a regular bed, the pressure points just arent relieved and it actually feels like I'm bruised when I lay on a regular bed.

Here's how you make your own Tempurpedic Bed (and I'll tell you why you need it all after)

You keep your regular boxspring - but purchase the following:

10 Inch Memory Foam Mattress QUEEN SIZE: $399.00

http://www.overstock.com/Home-Garde...ensations-Queen-Mattress/3514722/product.html

4 Inch Serta 4 lb density Mem. Foam Topper GET IN KING SIZE FOR QUEEN BED: $189.00

King Size Down Alternative Matress Pad *Walmart*: $49.94

http://www.walmart.com/catalog/product.do?product_id=4026169

TWO of these in KING SIZE 370 TC Matress Cover Pads ($22.88 each): $45.76

http://www.walmart.com/catalog/product.do?product_id=4026169

TOTAL WITH NO PROMO CODE: $683.70 (shipping + tax)

SHIPPING FROM OVERSTOCK: $2.95 (GREAT DEAL!! as these are heavy!)

SHIP TO STORE FROM WALMART OR GO PICK UP: FREE

OVERSTOCK PROMO CODE: $20.00 Off $500
http://www.dealtaker.com/Overstock-coupon-code-a297-c.html

So, your total could be $663.70 +$2.95 shipping + tax at Walmart for other items.

You put it together like this:

Boxspring
10 Inch Matress
4 Inch Mem Foam Topper
First Reg. Matress Pad (mem foam is hard to clean)
Alt. Down Matress Pad (gives you loft, keeps you warm in winter/cool in summer) and softness
Final other Reg. Matress Pad

Why so many layers? Well - because if you've ever been to a mattress store and looked at a $6,000.00 - $7,000.00 matress, they are built just like this!

So now you can have one for a FRACTION of the cost.

We love ours and have had it for about 5 years now. We cannot buy a mattress, even a cheap one, for the price we paid for this and everyone that comes over to our house, loves our bed so much so that they have made their own as well. We've even done it to our RV because we just cant sleep on regular beds.

I know $$ is tight for people right now, but if you can buy a piece at a time, it is so very worth it. If you're not sure if you'd like a Tempurpedic bed, go to a mattress store and try one - all of your pressure points are relieved. If you do this (make your mattress) and its too soft for you - then you can add regular egg crates in different stiffness until you get just the right amount of hardness you desire - just make sure whatever size foam you get for the TOP of your mattress is a size larger than your mattress itself. You will have to cut the memory foam from a King down to a Queen (and any other size as well) but if you buy a Queen size Topper - it will be 6 inches short top to bottom and 2 inches short side to side - so you need to buy a size larger. The actual MATRESS you buy in the size bed you have - nothing changes there.

Hope I can help at least one person....

 

[curliet]

You know, this thread has given me, and I'm sure some of the rest of you, some really good ideas on tricks and tips to cope with this stuff, the FM and all the connected problems. I'm so thankful that so many of you have posted here.

Are there others who are coming back to read to see if anyone has said anything else that they might find useful?

Is there a mod reading or watching this thread? Would it be possible, if enough of us are willing to keep it going, to keep this thread stickied someplace so that we could use it as an online support group? I'm thinking beyond just talking about how hard it was to be diagnosed, but on to where we have to learn how to deal with daily life. I found that going to a support group once a month did help, folks had all kinds of suggestions, and it was also good to find that there were people with the same weird symptoms that I had. Does anyone else think this is a good idea?