Fibromyalgia??

[Calamber]

[QUOTE=LauraKY;6226604]
Calamber, you nailed it. Fibro is not a disease by itself. It’s a constellation of symptoms that may be caused by various different infection and allergies. Oddly, I’ve found that many people with a fibro diagnosis refuse to investigate further. I don’t know why. Maybe it’s doctor resistance (easy to diagnose, and then throw pain meds and anti-depressants at them), maybe some people identify with that particular disease, I assume some have investigated other causes as far as their insurance and pocketbooks would allow.

My Lyme doctor recommended Dr. Shoemaker for people who couldn’t get their Lyme under control.[/QUOTE]

It is doctor ignorance and resistance, always easier to treat the symptons. But it is also the patients ignorance. I would not have known what was wrong with me if I had not known a woman back in Northern Virignia who almost died from mold poisoning (black mold in her case, not mine thank God). I can tell you how sick one doctor made me last year, going the traditional “conservative” (really the wrong term) route, doctor prescribed 90 mg of diminishing doses of prednisone for nine days. I almost lost my mind, the emergency room RN on Whidbey said she had never seen someone given that high a dose for allergies, only for a brain trauma! I even told this doctor I never had allergies in my life, at 55 years old, and that I thought I was mold poisoned. Too bad, anti-histamines, inhaler, Advair, and different kinds of anti-histamines, I went into the emergency room three times for this before I went the route of 1) moving 2) getting two really expensive filters for my house and finding a doctor who would treat the mold. I was on Cholestyramine (normally used as a cholesterol drug), for three months. It binds and alllows the body to eliminate the mold toxins. In fact, mold poisoning is being looked at as the culprit for ALS,MS, most muscular neurologic problems, and of course the reason for fibromyalgia in many, many cases. I could not breathe, I could not sleep, I would spend hours in the hot shower to open up my air passages, felt like my throat was closing off my ability to get air, so scary. Find the right doctor, don’t give up, it is your life and your health.

[Calamber]

[QUOTE=LauraKY;6226604]
Calamber, you nailed it. Fibro is not a disease by itself. It’s a constellation of symptoms that may be caused by various different infection and allergies. Oddly, I’ve found that many people with a fibro diagnosis refuse to investigate further. I don’t know why. Maybe it’s doctor resistance (easy to diagnose, and then throw pain meds and anti-depressants at them), maybe some people identify with that particular disease, I assume some have investigated other causes as far as their insurance and pocketbooks would allow.

My Lyme doctor recommended Dr. Shoemaker for people who couldn’t get their Lyme under control.[/QUOTE]

That is interesting that your doctor recommended him for Lyme, my doctor is as I said a member of ILADS. It is a good idea to look up their website and Dr. Shoemakers’ if you want to better understand these types of issues. The deal with Lyme also is that you could have various tick borne coinfections like Babesia, but there is a sane and thorough way to go through this step by step. If you need some help, Dr. Marty Ross in Seattle does have free webinars and will answer questions from people who are not his clients. (who the heck ever heard of a doctor doing that!) He is really committed to helping people and is a wonderful man. You need to sign up through his website.

Interesting to note that some people with Lyme are having considerable success using Lithium Orotate for sensitivity to light and general “buzzing”. You need to really push the envelope to find help these days and you do have to be your own advocate and research, research, research.

[SendenHorse]

http://www.psyweb.com/FMS/fibromyalgia.jsp

[frmvt]

Try a no sugar diet

I have had fibromyalgia for years. Meds always had bad side effects so I stopped taking them. My chiro challenged me to try a no sugar diet for 4 weeks. What an amazing difference it made. Almost all of my symptoms were gone, or at least manageable. I walk everyday and drink lots of water. What you eat and drink make a huge impact on your fibromyalgia. Sugar, alcohol and nicotine are to be avoided. Hope you feel better soon.

[sketcher]

[QUOTE=frmvt;6238417]
I have had fibromyalgia for years. Meds always had bad side effects so I stopped taking them. My chiro challenged me to try a no sugar diet for 4 weeks. What an amazing difference it made. Almost all of my symptoms were gone, or at least manageable. I walk everyday and drink lots of water. What you eat and drink make a huge impact on your fibromyalgia. Sugar, alcohol and nicotine are to be avoided. Hope you feel better soon.[/QUOTE]

I know diet can not fix everything but when you are an autoimmune mess it seems food is often the culprit or at least an aggravator of symptoms. Due to gluten intolerance I had symptoms of fibromyalgia and had Dr;s want to slap the label on me but I did not have any of the trigger points- just the overwhelming bouts of fatigue, fogginess, joint pain, muscle stifness…I also had mild symptoms of Raynauds and for one winter if I went out when it was cold I had the most unbelievable pain in my fingers, it did not matter what i wore on my hads…very strange.

For me it was gluten. And sugar affects me too. As does dairy. But gluten is the absolute evil for me. The other stuff just adds to it. Now 98% of the symptoms are gone and the cold weather stuff is completely gone.

[LauraKY]

[QUOTE=Calamber;6226907]
That is interesting that your doctor recommended him for Lyme, my doctor is as I said a member of ILADS. It is a good idea to look up their website and Dr. Shoemakers’ if you want to better understand these types of issues. The deal with Lyme also is that you could have various tick borne coinfections like Babesia, but there is a sane and thorough way to go through this step by step. If you need some help, Dr. Marty Ross in Seattle does have free webinars and will answer questions from people who are not his clients. (who the heck ever heard of a doctor doing that!) He is really committed to helping people and is a wonderful man. You need to sign up through his website.

Interesting to note that some people with Lyme are having considerable success using Lithium Orotate for sensitivity to light and general “buzzing”. You need to really push the envelope to find help these days and you do have to be your own advocate and research, research, research.[/QUOTE]

Yes, I started with Dr. Jemsek in NC (now in Washington DC) and then moved to Dr. Singleton in Baltimore. Both ILADS doctors. I also had Babesia and Bartonella. The magic triad. I was pretty sick. Dr. Singleton said it might be interesting to take the visual test. He’s an outside of the box kind of doctor.

[beaujolais]

Long term fibro sufferer here.

IMO (and I work in medicine) Drs. really should be tapering people up to doses of a medication when they first start. I’m a huge believer of tapering up to a dose, until you get used to the medication. (And tapering down when coming off one). Avoids lots & lots of problems. I start out with 1/4 of anything they prescribe & increase over a month or two, or more.

(And Drs. often prescribe without telling people that the medications may take some getting used to, then the side effects may go away.)

For me, Ultram is a life saver. I can only take half an Ultram and then I bolster it with two Tylenol. A full Ultram would make me feel sick and I’ve been taking Ultram for years. I found many of the Ultram side effects go away after you get used to the medication, by taking a small (I’d do just !/4 of a tab) for the first few months.

I also like/have used:

Cymbalta (again, I’d taper up to it)
zanaflex (for muscle spasms) (another taper up to it)

chiropractor
massage therapist

Corvalen-M (a fibro website recommended it)
http://www.amazon.com/Corvalen-Bioenergy-Life-Science-inc/dp/B000U63CCM

Triple magnesium pills from GNC for when things are cramping & burning

Lidocaine patches
Flector patches
hot patches from the drug store (Icy Hot, etc.)

Feel better, all. It’s a hard, hard road.

[beaujolais]

Question for the fellow fibros:

Do any of you start feeling sick/bothered from:

fluorescent lights

bright lights

really sunny days

noise

summer ?

All of those are such bad news for me.

I do best in the fall & winter. You?

[Bearskin]

absolutely! All of the above. I acutally prefer cooler weather. In addition, the het seems to really make me hurt more.

[bstmorgan]

Fibromyalgia

Sjogrens is the disease you were trying to remember. It is a form of arthritis but hits the salivary glands, eyes and lymph nodes can turn into lupus and other diseases. Must have a biopsy of your mouth to confirm. It is also painful to the joints. They treat with medications to help your eyes to stay lubricated, as well as some other specific drugs along with keeping joint pain in check

[Wildhearted]

Former lurker finally joined

I have had this monster since 1997 and being told it was in my head for 5 years and until last year under treated for it. Alot of damage done now

One thing I use that works well enough for me to function at work is Valley Naturals Aches and Pains at WalMart I keep 2 bottles on hand. Takes a couple of days of use to really see a difference but it works.

My arms and legs are weakened due to pushing myself had no choice too far but horse back riding a half hour helps relax the muscles (will get another farm soon so I can ride, there is too much speedy idiot drivers and a cougar den near my girls) so the doctor actually ordered a half hour of riding or just simple quiet time with my horses. Best medicine!

I am on Lyrica, Cymbalta. Para Fon (muscle relaxer), mirapex for the restless legs

As we used to say on one Fibro board. Soft hugs!!!

[Wildhearted]

Yes to many of these on bad days.
I cannot stand bright lights, certain noises.
Spring and Fall are my better times, although last summer I did rather well.

I cannot put ice on my body it kills me, heat works best for me and the headaches OMG I miss at least one day a month from work from it.

[QUOTE=sonomacounty;6239438]
Question for the fellow fibros:

Do any of you start feeling sick/bothered from:

fluorescent lights:

bright lights

really sunny days

noise

summer ?

All of those are such bad news for me.

I do best in the fall & winter. You?[/QUOTE]

[beaujolais]

Valley Naturals Aches and Pains at WalMart?

Hello Wildheart ! Welcome fellow horseman & fibro sufferer !

What is in the above that you mentioned? Ooohh, a new potion I can try. I’ve tried most of them.

Do you have a prescription headache pill? I take Esgic Plus, it’s Great !

Soft hugs to you, also.

[Wildhearted]

Thanks Sonoma.

I had to go check and verify the name, my B12 deficiency and my Fibro Fog is horrid.

Hope this is okay to post if not the mods can remove it for me
http://www.thevillagecompany.com/villagenaturalstherapy.html?panel=3

My doctor refuses to put me on any pain meds he wants me to get the shots, but I can’t take a whole day off for that so I suffer onwards. I take migraine meds for any headache.

I have been on most of the meds they tell me so they classified me as Chronic Fibromyalgia. Nice eh

I find a close relationship with my hot water bottle and heating pad LOL

Where can you find that medicine you take? Is that a prescription?

[QUOTE=sonomacounty;6338373]
Valley Naturals Aches and Pains at WalMart?

Hello Wildheart ! Welcome fellow horseman & fibro sufferer !

What is in the above that you mentioned? Ooohh, a new potion I can try. I’ve tried most of them.

Do you have a prescription headache pill? I take Esgic Plus, it’s Great !

Soft hugs to you, also.[/QUOTE]

[beaujolais]

Thanks Wildhearted. So, the Valley Naturals is a bath soak? I love eucalyptus !

Esgic Plus is a prescription headache medicine. The over the counters do nothing for me when I’ve got a bad one.

My doctor refuses to put me on any pain meds he wants me to get the shots.

I love how they can say that when they are not paying your bills for you. Well, hey, it’s not Them who’s in pain, so they can say that ! (Oh, if the shoes were on their feet.) I’d love to not medicate but for me, I barely get by with medication. I’m not advocating pain meds but for me - no meds - no workie. That wouldn’t help the mortgage any.

B12, yes, fine, but I’d get a different doctor, JMO, he’s no help, nor is he sympathetic to you.

Do you take both Lyrica & Cymbalta? Maybe another muscle relaxer might be easier for you to handle (tend to produce less fog). Some of the fibro meds can also cause some fog.

Soft hugs to you, too.

[Wildhearted]

The Lyrica and Cymbalta are the only things that don’t have bad side effects for me or fails to work.

I am considering a new doctor yet again

[Wildhearted]

PS yes a soak I want to try the other healing stuff they have but WalMart only carries the Aches and Pains here

[beaujolais]

Now, not to be a pain, Wildheart, but each day - do you take both Lyrica & Cybalta? If so, interesting !

You know, people (& some Doctors) say how pain killers are not good and the Drs. shouldn’t prescribe . . . And it’s all over the media.

Yes, but how about, if I couldn’t I’d surely loose my job, get excessively depressed (then meds for that ?), need to apply for public assistance and it would spiral down from there. Oh, they ---- me off when they don’t think the pain is huge and real.

What I do for pain meds is no big deal actually - 1/2 a 25 mg. Ultram and 2 tylenol about 3 times a day. It’s not great but I get by with it.

Uuuggh, it’s summer now - a fibro nightmare for me.

[Wildhearted]

The only pain med that worked for me was taken off the market, Darvacet. I just take OTC pain meds which don’t do enough.

I take both Lyrica and Cymbalta yep but until finances get better I can only take them as needed, I do have discounted pharmacy with my insurance which I have to re up every 6 months in order to have decent insurance.

My job is classified part time and since this is a pre existing condition this insurance was the best I could get. I don’t get any benefits working for a 501c place.

I just deal with most of the pain and it can cause me a day or two off work a month. With my age 42 I figure hormones isn’t helping.

My sister and her one son both have Fibro and she can barely handle Lyrica, gives her the lyrica loopies LOL

[kichiri_kachiri]

I haven’t been diagnosed with fibromyalgia (as of yet), but I’m in a similar situation as far as bloodwork.

I just had some of the same tests done (for sudden onset severe join pain - just when I was almost able to ride again after a concussion!). Negative for lyme and other tick-borne diseases, with RA unlikely. My ANA has been slightly high before (and was again this past time). IN MY CASE, my doctor wasn’t too worried, saying that a positive at a low level wasn’t uncommon for patients with Chronic Fatigue Syndrome and that we would keep an eye on it. This may not be the case for you (ask your doc), but it’s a thought.

ETA:
Besides Ehlers-Danlos, you might also look into POTS (postural orthostatic tachycardia syndrome), I don’t know if any of your symptoms match but thought I’d bring it up as POTS has been associated with both Fibro and E-D (lucky me … not).
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
http://www.potsplace.com/

Hope you figure it out soon!