Tag Archives: Fibromyalgia

Hair Problems in Fibromyalgia, by Beverly Hicks Burch

Hair Problems in Fibromyalgia.

Here’s yet another interesting article from the About.com people and their Fibromyalgia and Chronic Fatigue Syndrome department.

This particular article deals with our hair! Gals you know what I’m talking about…days and days and days of bad hair days. Actually, it goes a little further than that. This article goes on to explain those of us that deal with this devastating disease may also deal with hair loss or alopecia. There is a bad news/good news factor to this discovery.

Bad News: Yes, it does appear like other autoimmune disorders, hair loss can be associated with fibromyalgia. It tends to rear its inconvenient head during flare ups or times of stress. Big “duhs” there for those of us with fibro, huh? We kinda already knew this!

I started dealing with this factor 10 or 15 years ago when I realized my hair just wasn’t as full and thick as it use to be. I’ve always worn my hair long (at one time waist length) and my hair was always nice and full and thick. There was one point a few years ago it would come out by the handfuls as I washed it in the shower. I associated that episode to a particular medication, stopped that med, started a new one and no more shedding like a sheep dog in the shower.

Good News: Yes, there is good news. It appears the hair loss from fibromyalgia is temporary and will grow back. So, patience Grasshopper. Remember the sheep dog shedding I was doing in the shower? Well, my hair did grow back.

I can’t promise your hair will ever be as full as it once was (I feel like I’m about to bust out into a Toby Keith song right about now), but it will be better than it once was. Also, if you do have other autoimmune disorders, they will also affect your hair, too.

Here’s one thing I can recommend: Nioxin Shampoo .

I’ve been using this shampoo for over 10 years now and swear by it. It cleanse your hair, helps thicken the hair and helps remove the residual of all the meds we take that end up in our hair.

The other thing I can recommend for healthy hair (and nails) for those of us dealing with hair issues is a daily supplement of Biotin. I take 2000MCGs a day. This has been highly recommended by every stylist I’ve used over the last 10 years or so. Biotin promotes healthy skin, hair and nails.

So, if you’re a fibromyalgia patient, don’t think you’re crazy over the “hair thing”. Yes, it can happen and yes, there can be relief and help. Just hold on and ride it out and it will get better!

 

© 2012 Beverly Hicks Burch All Rights Reserved.

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Filed under "Autoimmune disorders", Autoimmune Diseases, Biotin, Fibromyalgia, Hair Loss, Health, Health News, Nioxin Shampoo, Women's health

Educating Your Doctor (& Others) About Fibromyalgia

How true…how true… Another great article concerning fibromyalgia and dealing with the Neanderthals around us who don’t believe in fibromyalgia or know nothing about it.

Educating Your Doctor (& Others) About Fibromyalgia.

 

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New criteria proposed for diagnosing fibromyalgia

New criteria proposed for diagnosing fibromyalgia.

Years…and I mean years ago I was first diagnosed with Chronic Fatigue Syndrome. I think the year was 1990 when the “official” diagnosis was made, but I had been suffering with the symptoms since the early 1980s.

My beloved family physician who has since passed away was very well read and stayed current on many medical trends. He saved my lived twice by discovering lung cancer in a patient with little or no risk factors to give her even a modicum of a chance of even thinking “lung cancer” will afflict my body…but it did anyway and Dr. James S. Davies was smart enough to catch it and save my life…

Anyway, during the 1980s when these “non-specific” symptoms began to rear their ugly head, Dr. Davies said there was a lot of talk about a new kind of illness or syndrome that doctors were having a hard time “pegging” but that a lot of people were showing up with…he said it was kind of like having mono all the time and never getting rid of it…that was the best way to describe it back then…

By 1990 there was a young doctor who was in practice with Dr. Davies for a while and he was pretty sharp, too. He diagnosed my Raynaud’s Syndrome and between him and Dr. Davies they were able to put their finger on Chronic Fatigue Syndrome.

Here is where we begin to see that as far back as 1990 our health care system was “sick” itself. At the time I was insured under the ex’s plan at work which was Blue Cross/Blue Shield. They refused to pay for any of the blood work, tests and visits that were done at the the time because of the diagnosis…”chronic fatigue syndrome”.

Not only was I livid, I was curious…this bill was several hundred dollars…a substantial amount even for those days. I was told by BC/BS they would not pay for anything related to chronic fatigue syndrome because it was a mental disorder and not covered.

Being the bright gal that I am I explained to BC/BS that no indeed, there was enough research done on the subject that suggested several causes for CFS not the least of which could be a retrovirus and that I was certainly not insane, crazy or mentally ill, but I certainly would be after dealing with them…

They were not amused…

The only way BC/BS would pay was if the diagnosis was changed…so the doctors simply took the word “syndrome” off the diagnosis and viola the bill got paid! They would pay for chronic fatigue…period…

Later, fibromyalgia became the talked about subject and I can tell you it clusters in my family making me wonder if there is some kind of genetic link…my momma had FMS and so does her sister, my maternal aunt…

A few years later after being referred to the rheumatologist who diagnosed my Sjogren’s syndrome (1993), he confirmed fibromyalgia…

The debate is this…are CFS and FMS one and the same or two separate issues?

All I know is this…either/or make you very sick, debilitate you, alter your life and change the quality of your life…forever…there is no getting better. It is about more than just the pain…which is indescribable…it is the muscle weakness…the disabling fatigue…the stomach problems…yes, the dizziness…the whole enchilada as they say. The above link to the article and the information therein is, in my opinion, a long time coming when it comes to calling out everything that goes with FMS.

All I can say is…it’s about time!

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Filed under "Autoimmune disorders", Autoimmune Diseases, Chronic Fatigue Syndrome, Disability, Fatigue, Fibromyalgia, Health, Healthcare, Lung Cancer, Sjogren's Syndrome, Women's health

New Diagnostic Criteria for Fibromyalgia

New Diagnostic Criteria for Fibromyalgia. Please take the time to read this interesting article if you have FMS!

For years doctors have used “tender points” as a tool to diagnose fibromyalgia and those tender points have been considered controversial.

Personally I’ve always thought FMS was so much more than those tender points. For me it’s  been the muscle weakness, the debilitating fatigue, loss of sleep, dizziness, lack of energy, extreme pain and overall malaise. Hopefully these means progress in helping FMS patients!

It’s about time, right?!

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People With Fibromyalgia Prone to Falls

People With Fibromyalgia Prone to Falls.

This article is from WebMD and is about a study and patients with FMS. The study found that people with FMS are more prone to falls because of balance problems. Let it be known…I resemble that remark!! I knew it was related to something…just wasn’t sure what…

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Filed under "Autoimmune disorders", Autoimmune Diseases, Fibromyalgia, Health, WebMD, Women's health

Eggs for Fibromyalgia & Chronic Fatigue Syndrome

Eggs for Fibromyalgia & Chronic Fatigue Syndrome.

Okay…now they’re good for us …again.

Interesting article about eggs and how they are a good super food for people with fibromyalgia.

In that case my little Momma should be able to leap tall building in a single jump… 😉 Daddy says she’d be lost if chickens stopped laying eggs 🙂

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Filed under Fibromyalgia, food, Health, Life, Women's health

Predicting Fibromyalgia: Results of 25-Year Study

Predicting Fibromyalgia: Results of 25-Year Study.

How do you compare to this 25 year study? I was surprised to discover the allergy connection. With me though I don’t know if it’s a case of which came first…like the chicken or the egg. When I was a child I don’t recall having many allergies, but as I got older I seemed to have developed them, but I also seem to have FMS and other problems, too.

As far as the morning sickness all I can say is OMG!! I was sick the entire time I was pregnant…24/7 and actually had to be hospitalized twice because I was so sick.

So, in my mind there many be something to the study…

Smoking wasn’t a factor for me. I was a NON-smoker wasn’t raised by smokers or married to a smoker. That gives me 2 out of 3….

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Fibromyalgia Symptoms – Complete Fibromyalgia Symptoms Checklist – The Monster List of Symptoms

Fibromyalgia Symptoms – Complete Fibromyalgia Symptoms Checklist.

If you are someone that is afflicted (yes, I said afflicted!) with fibromyalgia OR if you’re a friend or family member of someone who deals with this debilitating disorder PLEASE follow the link above.

I have a category on my browser home page that updates me routinely with the latest on FMS (fibromyalgia syndrome) and chronic fatigue syndrome. This article came across today via the author’s reference as she was discussing the symptom of hair loss and fibromyalgia. I wish someone has told me this earlier. I knew autoimmune disorders could cause hair loss, but I had no idea it accompanied FMS. Luckily because of good hair care products (Nioxin Shampoo is a God-send) I’ve managed to control the symptom.

Many times we are given a very short list when we go to research FMS. As I read the “monster list” it was like a eureka moment for me…it answered so many health questions dating back to my 20s and 30s.

I always KNEW I wasn’t crazy…I was just dealing with fibromyalgia!! What a help it would have been for me and my family if I had had this information earlier…

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Practicing Medicine, by Beverly Hicks Burch

Practicing Medicine

By Beverly Hicks Burch

So, what has Bev been up to? Well, as life would have it, a little of the same and a little of the new. It’s been a busy time, a hectic time and as kismet would have it a sickly time. Like I needed that like a hole in the head!

It’s kinda like this…in November when I went to my rheumatologist in Birmingham I knew I was feeling really bad. I was sick. I could barely lift my left leg because of hip pain to put on a sock or shoe. As I drove to Birmingham both of my hands hurt just to hold the steering wheel…I wished I had learned that knee-driving trick Daddy used to do when we were kids. No kidding…he could steer the car with his knees and eat a burger if he had to, but of course that was on rare occasions. I guess steering wheels were larger back in the days…

Anyway, by the time I saw the doc, I don’t think there was a place on me that didn’t hurt, ache or wasn’t swollen. My eyelashes even hurt. It was a good thing I was seeing him.

The last few years have been rough…in more ways than one. Of course autoimmune disorders are exacerbated by stress, trauma…and drama. Umm…isn’t that how you spell LIFE?! So, you don’t have a snowball’s chance on a hot day in July unless you live in a deprivation tank or a monastery or convent for avoiding those factors…and I’m sure there’s a different kind of stress in those surroundings.

Sometimes I do become a little skeptical of doctors themselves. I often comment that after all they are just “practicing” medicine…maybe they’re not quite sure yet about what they’re doing. Those expressions are in moments of frustration…

For instance, in October 2005 I literally nearly died because of a careless mistake a doctor made. I had just moved to Knoxville and was looking for a primary care physician. I had begun to have some hypertension problems…something new for me and I could tell it was getting severe because I was keeping a very troublesome headache. My doctor in Alabama had given me a diuretic for hypertension just before we moved, but I knew it wasn’t treating the problem and needed further treatment.

So, off I go to a new doctor in Knoxville. Now, because I have such an extensive and long medical history I keep a record on a Word document which I update routinely. I also keep an updated list of my medications on a Word document. This is a good time to recommend you do this if you have any medical conditions and/or you take prescription medication. Be sure to tell someone in your family where it is on your computer so they can access it in a time of emergency.

Anyway, I went to the new doctor armed with my medical history and medication lists and explain why I was there. I filled out all the necessary paper work…a lot of which was a redundancy because of the documents I provided, but I didn’t mind…better safe than sorry…

When the doctor walked in I got bad vibes right away. First, I felt like he had just gotten off a tractor…he seemed more like a farm hand than a medical professional, but he was on my HMO’s healthcare provider’s list. Then, I knew from the way he talked to me he hadn’t taken the time to review my paper work or the history I had provided him. My first clue? He seemed surprised when I mentioned I was a two time lung cancer survivor even though that was clearly noted on the paper work I had filled out in his office and on the medical history I had brought from home. I also told him I had taken two of the diuretics previously prescribed earlier that day.

As I was to discover later, evidently he hadn’t paid much attention to my list of medication either…and that almost cost me my life. Long story short…he prescribed a hypertension medication for me. I took it to the pharmacy, had it filled and took one with supper.

About 10:30 or 11:00 that evening Tall & Handsome and I had been sitting in bed watching TV when all of the sudden I started feeling strange. He had drifted off to sleep. I staggered up to my feet, mumbled to him I felt odd and tried to make it to the bathroom. He of course hadn’t heard me…the one time Mr. Insomniac was sleeping soundly. He did hear me when I crashed to the floor in the bathroom doorway.

After the cats levitated in the air and shot off and hid (that’s a neat trick I wish I could learn), T & H jumped up and was at my side in a couple of seconds…his face as white as a sheet. I told him I felt extremely odd and it was getting worse. He asked me what kind of odd and I told him it felt like the life was draining out of me. He instantly took my blood pressure. (He really would have looked good in a white coat and been debonair as Dr. Tall & Handsome. But, alas, he has one of the same maladies as me…the sight of blood.).

If he had any color in his face…it drained out at that point…when he read the BP monitor. My BP was something like 78/46 and my heart rate was about 47. He wanted to call the paramedics, but of course being the stubborn Scotch-Irish-German-Native American that I am, I said no…oh, and the fact I’d had a bad experience with an ambulance before didn’t help.

I contended the BP machine had to be wrong and I finally agreed to let him take it again. I think any color in my face must have drained out at that point because the numbers were even lower by then…and I was scared. I agreed to let him call the paramedics.

Word to the wise…don’t ever collapse upstairs…because you have to walk yourself down the stairs…then you get on the gurney! Oxygen, IV, tubes and all! I vaguely remember T & H slipping socks on my feet (he’s sweet like that) before they closed the ambulance doors and then he dashed in to print off my medical history and med list off the computer. He knew in his state of mind there was no way he could recite all of that in admitting…heck, he’ll be the first to tell you he couldn’t recite it all in a calm state of mind. I’m the one that keeps up with his meds!

Off we dashed to the ER, sirens blaring and they sent me right back to a cold sterile room. After giving me a huge bedpan to get sick in (which I obliged), I had to hold it myself for what seemed like forever, shivering, alone until someone finally came in and retrieved it. Once again, I was alone until I heard a commotion out in the corridor. It was T & H insisting he be allowed into my room. I’m glad he did because I was scared.

I had to stay overnight in the ER because they couldn’t stabilize my BP or my heart rate. Both kept getting perilously low. I was violently ill at my stomach and blood work revealed my kidney enzymes were out of whack. I spent the night drifting off to sleep just to be awakened by the alarms when my numbers went too low. It was a great way to spend a Friday night…

So, example #1 of why Bev sometimes say doctors are just “practicing” medicine…

I changed doctors shortly after that because I found out the hypertension medication the “tractor doctor” gave me had interacted with the diuretic I had taken earlier in the day and he should have known that and forewarned me and recommended I delay taking my first dose until the next day.

To add insult to injury he insisted on keeping me on the medication. I developed a dry hacking cough and knew this was a side effect that needed to be reported to the doctor if I did develop one…the flyer that came with the medicine advised as much. My own father had been on the same medication and developed a cough and his doctor had removed him off the med and place him on a new one.

So, I called the “tractor doctor’s” office told them what was going on and got this response, “Well, I don’t think that a side effect.” And I had to stay on the medication. Grrr…

Example #2…

Once again, good ol’ East Tennessee born, Alabama raised, Scotch-Irish, German, Native American Southern gal that I am…I didn’t cotton too well to that…I got a new primary care physician.

The next doctor was better…to a degree. She was good for some basic things, but not too long after the ER incident I went to her about my neuropathy in my right leg. It had gotten so bad that in addition to feeling like a hive of bees were living in my leg, the burning was becoming unbearable, there was numb spots in my leg and just the softest touch to my leg would send me in spasms of pain. In other words…it hurt.

The new doc recommended a new “great” drug call Lyrica. And it was good. At first my dosage was two pills a day, but I spent the better part of my life drooling on myself in a deep sleep. Good news was…the pain in my leg was gone.

I decided to adjust the dosage to one pill a day and I was in the land of the living again. The trade off was the leg had just a slight twitch of “bother” to it…but I could live with it.

But, there was another very unpleasant, unwanted side effect…weight gain. It was like overnight in one of those drooling, stupor states someone pulled up and said, “Hey, I have a good idea! Let’s turn Bev into a blimp in time for the Macy’s Thanksgiving parade.” And, then, to paraphrase Arnold, proceeded to “pump me up”. Augh!! It was bad enough several round of steroids had already been going before paving the way…

Example #3…

I didn’t know what was going on…at least until I went to see my rheumatologist in Birmingham. When I told him what was going on he hit the nail on the head. He explain that weight gain was a very common side effect of Lyrica and that several of his patients had gained a lot of weight while on the drug. He recommended I discontinue the use…and I did. The pain came back, maybe not as bad…but the weight stayed…

It concerns me now because I see Lyrica being touted as a new drug de jour for Fibromyalgia (another one of my little jewels). It may work, but patients should really be forewarned of the behemoth behind this medication. When you are chronically ill, weight management is a bugger…you have multiple obstacles…and many times your medications are contributing factors.

So, currently I’m dealing with a new situation…this month I started taking Methotrexate for Rheumatoid Arthritis (RA). This was after going through another round of steroid after I got back from Birmingham and a therapeutic dosage of Vitamin D because I was very deficient.

My aunt had taken Methotrexate for several years…yes, she has similar maladies. Autoimmune disorders tend to cluster in families and mine is no exception. So, I’m a little familiar with the drug and I’ve seen how she’s reacted to it. It’s a mixed blessing.

Basically from what I’ve learned Methotrexate can be used in chemotherapy, but in low doses it can be used to treat autoimmune disorders such as RA as a disease modifying drug. It can have some pretty funky side effects including making you more susceptible to infections. It makes me sick at my stomach for about a day and drowsy for a couple of days. It’s affected my taste and I seem more sensitive to smells. I take it one day a week. Hopefully over time I will become more accustom to the medication and it will really begin to do some good.

If any of you have any experience with Methotrexate I’d really like to hear from you…how it’s affected you and if it’s helped.

What it boils down to is this…we should be informed healthcare patients. Too often people go to the doctor, get a pill, take a pill and a lot of the time don’t even bother to look at the name of the medication they are taking.

I discovered when I became more educated to what was going on with my body and healthcare, some of the fear was removed from the equation…and some of the helplessness.

I learned a long time ago some doctors may be “offended” if you are informed, educated, ask questions and want to participate in your healthcare. They are the ones with ego complexes…god-complexes. I would suggest that for long term care they may not be the one for you…at least they wouldn’t be for me.

The last thoracic surgeon who removed 60% of my left lung due to cancer in 1995 was like that…he also “inadvertently cut my pulmonary artery” during the procedure. God doesn’t slip and screw up like that, Buster! Get over yourself…oh, yeah…example #4…

© 2008 Beverly Hicks Burch All Rights Reserved.

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Filed under "Autoimmune disorders", cancer, Doctors, Fibromyalgia, Health, Hospitals, Lyrica, Methotrexate, My Tennesse Heritage, Rheumatoid Arthritis, Tall & Handsome, Women's health

No Wonder Elvis Left the Building, by Beverly Hicks Burch

No Wonder Elvis Left the Building

By Beverly Hicks Burch

Ok, I know I’ve been a little quiet lately. I’ve been under the weather in the midst of one of my infamous “flare ups”. Those of you with autoimmune disorders and other chronic health problems know the ol’ flare up as an “occupational hazard” blocking one of wellness and as part of our human condition. For the rest of you not familiar with flare ups, let me see if I can describe one…imagine having a two year old toddler going through the terrible “twos” strapped to your back while simultaneously two anvils are chained to your legs. Add to that, you’re now chasing your prized show dog who’s just gone into heat and has escaped outside and has all of the male neighborhood dogs of questionable (but loved nonetheless) heritage chasing after her…oh, and you have the flu, too while doing all of this. You get the idea…I don’t feel too hot…

During these times, I may not even feel like writing, but my mind stays active. With Fibromyalgia you get something called “fibro fog” that even makes thinking or concentrating difficult. During these “down times” I pay a little more attention to the TV than I normally do. As I’ve mentioned before, there’s one thing about TV…and pop culture in general that tends to annoy me…it insult people’s intelligence, dignity, decency and general overall good taste and that’s commercials. Well, I think I’ve seen the all time low. Let me set the mood…

The other night Tall & Handsome and I decided to have low-fat Rueben sandwiches for dinner…something we make here at the house. We made our tasty quick dinner and settled in for a nice little supper, some togetherness and maybe some entertainment or news on the telly. Whatever we were watching was not Tivo’ed so we couldn’t fast forward through the commercials. A pleasant looking ad commences…yeah, right…

A group of normal looking guys are sitting around in what looks like a cabin setting…maybe a cabin at a lake. And, they’re a talented, musical bunch! They’re having a jam session…they are all sitting around laughing, strumming on guitars and playing other musical instruments and singing about their “hot honey”. Upbeat music plays in the background. It sounds vaguely familiar…like an old Elvis song. There’s an announcer doing a voice over.

Suddenly, T & H and my ears perk up. There before our eyes, grown men were sitting around, grinning, channeling Elvis and singing “Viva Viagra!”

Can we all say Heimlich maneuver? No kidding…I didn’t know who would have to use it first, me or T & H as we choked on our Ruebens. He looked at me and I looked at him. His eyes looked like two big ol’ blue orbs of shocked southwestern, cowboy manhood.

I said, “They didn’t sing what I think they sang did they?”

Numbly, he shook his head yes. This man has a sharp quick, wit, but he was as speechless as I was.

“Honey, would you and your friends…or a bunch of cowboys, tech geeks or whoever sit around a campfire after branding cattle or stand around a water cooler and sing “Viva Viagra”?

He looked at me as if I had spat on the Holy Grail of baseball cards…the Honus Wagner card.

Even with “fibro fog”, I know there’s just got to be a better way to sell a product than that. And poor ol’ Elvis…no wonder he left the building. I would have, too…next thing you know we’ll be hearing, “Viva Hydraulic Pump” after some lame-brain comes up with some totally inappropriate ad campaign to shock and awe us.

Elvis, I feel your pain buddy…

© 2007 Beverly Hicks Burch All Rights Reserved.

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Filed under Commercials, Elvis, Fibromyalgia, Humor, Music, Pop Culture, Tall & Handsome, TV