Somewhere Inbetween... Fibro riders...

Yes, I’m on 10 mg. Amitryptilene and haven’t really had issues other than being very thirsty in the morning. Off and on over the last 3 years I’ve had a lot of tests done for various complaints that seemed to be getting worse and all tests they do are always normal. I’ve had CT scans and ultrasounds, lots of radiographs of course. They’ve tested all electrolytes, general chemistry panel, thyroid function, lyme disease, blood count, rheumatoid markers, other tests that check for various inflammatory markers, etc. Had an EKG done during a bout with a racing heartbeat that wouldn’t come down. Hospitalized due to a very low potassium level, was on IV potassium for 2 days. Did a 3 day urinalysis test following that and many blood tests to check for some type of kidney disease. Everything has always tested normal. I’m sure there’s other things I’ve had done that I just can’t think of right now.

But really since the fall the pain over my whole body has gotten almost debilitating. There are days I can barely make it home, then I crash on the living room floor with 4 ibuprofen and roll around in agony with a heating pad for an hour, then I can get up and go to the barn to do my own chores.

Somehow I always get the work done, but it is taking a toll on me.

My husbands thinks this all really “hit the fan” back in the fall when my horse flipped over and fell on me, damaging my shoulder. Cartilage was torn in 4 places and I was in severe pain for months. I kept trimming, but had to load up on ibuprofen, and use lots of muscle creams, massage, hot packs, etc. when I got home at night. It seemed that everything just flared up out of control after that.

I’ve had distinct instances where this flares up after eating alfalfa sprouts and I’ve read there’s something in them that is inflammatory. Apparently people with Lupus avoid them. Anyway, I asked the doctor about that and he said I had no signs - physical or on bloodwork - of Lupus or any other type of autoimmune disorder.

When the doctor tested all those trigger points I nearly passed out. I didn’t realize a person could inflict so much pain with merely pressing on your skin. Apparently there are 18 “official” trigger points but this doctor said he uses 21 points. I was extremely painful over most of them, and moderately painful over all of them except I believe my ankles.

The pain is in all 4 quadrants, and feels like it moves from day to day, affecting every joint, every muscle, tendon, everything. Just sitting in my chair I have pains surging through my legs for no reason. But give it an hour, and it will be a different body part.

Yes, they tested Vitamin D, and that was the initial thing we tried. I started on 2,000 IU a day back in, I believe November. Can’t say for sure, I’d have to look it up.

I’m off to ride now but when I get back, I’ll be laying in bed for 2 hours with a book. That’s how it always goes.

As noted, a diagnosis of Fibro can disguise Arnold Chiari Malformation. ACM can only be diagnosed by MRI.

ACM is not fun. Trust me. There really is very little that can be done for it, until it gets to the desparate stages, at which point you are looking at surgery very near your brain to correct the malformation in your foramen magnum.

Luckily (?) for me, it is still mild and except for pain control you just grit your teeth and bear it. However, if your dr. thinks itis a possibility, they should get a baseline MRI so they can keep track of how it is progressing.

NJR

Have any of you fibro folks been tested for multiple sclerosis? The more I read up, the more I wonder if I might be misdiagnosed, especially given that my condition seems to be worsening over time, not remaining the same.

I was originally diagnosed w/MS. I had just had LMEqT and told the rheumatologist that I simply could not have that - or Lupus, which was the other possibility - since I had finally gotten a little girl.

Be careful what you go looking for. MS does not have a very good prognosis. What you believe will always become true eventually. I could definately say that my fibro has gotten worse but then again I finally have found a doctor who says my neck problems are not the same as my fibro. So who knows. If I had indeed had MS I would, given the statistics, be dead now and have never seen LMEqT ride her pony.

Have any of you fibro folks been tested for multiple sclerosis? The more I read up, the more I wonder if I might be misdiagnosed, especially given that my condition seems to be worsening over time, not remaining the same.

Hi! I know little other than the simple basics about Fibro however my mother has MS so I know A LOT about MS. The biggest difference is diagnosis, from what I understand it is not possible to diagnosis fibro other than ruling out all other possibilities. MS however can be diagnosed by getting a scan of your brain and spinal cord, generally the lesions caused by the immune system attacking the mylin (protective coating around the nerves) are clearly seen.

While there are many symptoms similar in Fibro and MS (pain/fatigue) the numbness and tingling are generally seen only in MS.

If you have any concerns about the possibility of having MS PLEASE talk to a speacialist. While MS has no cure it can be slowed down, once damage is done to your nervious system it can not be undone.

My mother was diagnosed in 2004. She manages the disease very well, she is the fittest/healthiest person I know, walks/runs 6 miles a day and is currently going through the P90x program. She has made some adjustsments to her lifestyle like an extreme change in diet and she must rest 2 hours per day and get 10 hours of sleep at night. You would have no idea that she has a chronic disease if you didn’t know it. Our newest challenge is due to the damages nervious system, my mom has recently been diagnosed as diabetic. For use it’s just one more thing to add to the list. Her diet won’t have to be changed but she will have to measure her insulin levels everytime she eats.

We know that someday her physical symptoms will progress but at this point she is a (near) normal functioning person. She gets a scan every 4-6 months and her leasions have not progressed in 2 years.

I fervently hope that you do not have MS, but I hope you do get check out to rule MS out.

Penth… My fibro is getting worse. Or, I should say, gets worse… I have good days too, but certainly things are worse now than they were 3 years ago when I got kicked. OTOH, it’s a fairly easy diagnosis for the MS–worth persuing, because as I understand, caught early, you CAN manage it to some extent…

Thought I would post a positive update… I overdid it, BUT…

I trimmed two full sets of feet and two front sets today. I normally do one horse at a time, but I sort of got on a roll. I’m also starting two greenies, and bringing along a mostly-just-backed greenie… Worked all three of them, AND rode my stallion.

I was pretty darn tired and starting to get sore by the time I got to Papa, but after being ‘on my toes’ for the babies, it just felt like coming home to sit on him. :cool: My beloved Ancient Passier–I’d sell my soul for another couple to fit the others–doesn’t hurt At All. It fits him, it fits me. No sciatica, no numbness, no seatbone pain. Just… coming home. And Mr. Sparkly is soooo kind and steady at home. He moves off my leg and seat mostly at the thought. He’s been out all winter, so we just walked–and the rain spared him working the full 25 minutes I had planned, because The Ancient Passier DOES NOT get rained on. It is too rare and precious!!! But it just reminded me… HE used to feel like the kids do now… all wiggleworm and really focused paying attention… and look at him now. :wink:

I’ve been taking fairly large doses of Vit D, and sleeping like a ROCK. Also started a new natural Thyroid supplement, at least until I can convince my Doc to put me on 60mg Armour (the 30mg dose I was on is not available any more… ) so perhaps that is helping too.

It’s so encouraging to have a ‘normal’ day!

I’ve made a deal with myself that if I work 3 horses in a day, I don’t have to do any other excercise. 5x/week. Other than two days off (usually mid-work-shifts since they’re graveyards) if I DON’T meet my quota, then I must walk or otherwise excercise. I haven’t been at full capacity since I wrecked my knee, which followed being kicked by just about a year… so I think that’s fair for an excercise start up. Hopefully I’ll get a little more fit and want to really get back to fighting fit. We’ll see. :wink:

JumpIt, I am glad to hear your mom is doing so well. I hope I did not sound like I was trivializing MS.

I have lots of blood tests back this week. My Vitamin D is STILL LOW. And… drum roll please… so is my B12. In fact, very low, like, dirt low.

So there is the real reason for the anemia. But who knows why it is low?

So excited to go get B12 shots :lol: not. But surely it will help!

I guess this is just the beginning of unraveling the mysteries, if we ever do… because now he will work on ferreting out why the low B12. I’ll keep you all updated!

Edited to add the funny thing he said when I commented on my hair still falling out “I think you’d look great bald. Seriously.”

If nothing else, I have support for shaving my head.

OK, would someone please explain ELBOW pain to me??? :uhoh: :lol:

Faring fairly well after yest’dy. Didna get my rainy day, so didna take Flexoril–only slept 7 hrs. Back hurt, but normal “I abused myself” and particularly left loin… fair 'nough.

Trigger points are UNBELIEVABLE (I’m flaunting my floppy self in 60’s mode again tonight! :lol: :o ) But the weird thing? BOTH ELBOWS. Kill.

Weird. It’s always something, 'eh? The ‘migrating’ aspect of Fibro is fascinating in that morbid kind of way.

EqT–may I ask how much Vit D you currently take? I’ve got to get back on a b12 supp. :sigh: I wish I fed myself as well as I feed my horses. :wink:

5,000 IU a day, sublingually. Some of my other supplements have some in them, too.

Today I am supposed to hunt down sublingual B12.

Elbows… I dunno on that one! So far mine don’t hurt.

Believe it or not, WallyWorld has a B12 sublingual. I think the brand is “Nature Valley” or something?

Oh, wait. That’s granola bars, huh.

Anyway, dunno if yours will, but mine do. :wink:

EqT - nbd, just wanted to make it clear that MS isn’t a death sentence nor does it have to be life debilatating. It is life changing but it can be managed. :slight_smile:

My mom gets vB12 shots twice a week, she says they make a HUGE difference in her engery levels. If you need any help finding a place to get them let me know. ; )

pintopiaffe, you were darned close. The sublingual b12’s are Nature’s Bounty, and I get mine at Walgreens. They often have BOGO, so 2 bottles for $10. Which reminds me…I need to go get some myself!

Not on the B12 or MS topics…

But just wanted to pass along that I now have a combo bed consisting of:

one of these (musta got it on sale because I only paid $70):

http://www.amazon.com/AeroBed-Premier-Classic-Comfort-Coils/dp/B0006TJ42A/ref=sr_1_2?ie=UTF8&s=home-garden&qid=1270906404&sr=8-2

and one of these:

http://dreamsoftbedware.com/bsnugormatco1.html

Airbed is nice and adjustable, and more comfy than the camping air bed that I was using before. Finding that my tossing and turning quotient has gone WAAAY down! The mattress pad is VERY cushy! Much more cushy than medical sheepskin!

Fortunately, my husband and I put 2 twins on our King platform bed because we like such different firmnesses and don’t really want to shell out for a really expensive ‘two sided’ king…

I’m up to 15 mg. amitriptylene and still having no negative side effects. I am sleeping quite well and feel somewhat better during the days though this morning is really awful. I need to be outside riding but my knees are killing me. I trimmed 2 last night, have 1 to do today and 10 tomorrow, then about 30 over the next week. I just want to do NOTHING for once.

What works for me

Hi, I too have suffered with Fibro for years. I was also diagnosed with Juvenile RA at 14. Pain and I are very well aquainted. I just found this thread and read it through this morning. I have been away from this forum for a long time. I found something that has worked for me and also for my 25 yr old daughter who was diagnosed her freshman year of high school. It is a juice by a company called Mona Vie. My daughter found out about it from a friend of hers and became a distributer. Now that I have used the juice and gotten such good results, I have become a distributer too. It is a pyramid type business. I want to be upfront about that here because there are those that will think I’m in it for gain from other fibro sufferers. You can get your own from the company. In only 2 1/2 weeks of drinking this I have no muscle pain. None. My DD has minimal and it is getting better daily. Obviously I don’t know if it will work for everyone, but I’ve given bottles to other fibro sufferers here where I live to see if it will help them too. I am anxiously awaiting their results. If you would like to check out the website… http://www.monavie.com/Web/US/en/product_overview.dhtml
If anyone would like more info or to talk to us feel free to pm me. I love this stuff!!! I can’t begin to tell you the difference this has made. I am still dealing with the arthritis but without the additional pain from the fibro, its a cakewalk! I fell on Easter and broke 4 ribs so now I have to wait to get back in the saddle but look out when they finally turn me loose!

Dawn

I tried the Mona Vie–first bottle was free :wink: and while it seemed to very slightly supress my appetite the first week, other than that… nada. I bought a 2nd bottle, hoping the appetite supressant would at least work… nope. <shrugs>

I’ve been on a super run of getting the young’uns worked reguarly… then yest’dy woke up with a stupid muscle strain in my loin. Have no idea how I did it. It’s the bad hip, though the hip has been excellent since the Cymbalta.

Just frustrated. I declined getting a ton of grain today thinking unloading it wouldn’t be the brightest idea. :stuck_out_tongue:

Come to think of it, everything else is doing pretty damn well. The creature under my right shoulder blade seems to be hibernating… Neck has been pretty good. And I’ve gotten some lovely work in with my orphan SillyFilly.

SO. There. I guess a day or two off is not the worst. I just have a self-imposed deadline, was hoping to bring a couple horses down to school when I scribe at a show the first weekend in May… Not going to spend the gas money to hook up the trailer though if we ALL can’t get more fit. :wink:

Blood tests came back today- my SED rate is twice what it ought to be and my vitamin D went from 13 in January to 15 now. It is supposed to be 30-40, and I just completed a 6 week course of weekly 50,000 units supplementation.

So- what do you folks know about SED rates- is that a fibro thing, or am I looking at another zebra in the mist?:sadsmile:

Also waiting to hear the report on my MRI suspected herniation of disc at L4/5.

I loved Mona Vie- as fruit juice, not as magic wonder liquid.

I am so tired of being me these days. Why bother?

SED Rate indicates inflammation OR infection.

I had a ridiculously high SED rate one blood test, but also came down with one of the worst chest colds/bronchitis/sinus infections I’d ever had quite shortly afterwards. The Dr. had heard my breathing rattle during the appt, and handed me a script for really, really good cough medicine and a Z-pack… :wink:

It’s been elevated a couple of times since, but never like that.

So the problem is, it measures inflammation, but you can’t really tell WHAT is inflamed… could be arthritis, could be muscle inflammation, could be infection… could be an ingrown toenail. Could be the disks… :sigh:

But it defintely should help the doc to point you to more tests and/or a rheumatologist etc.

That Vit D is pretty scary!

Hang in there though. An article I read recently said that it takes most people about two years to get a diagnosis. :frowning: So, at least you’re STARTING… and hopefully some of the info right here on this thread is helping some of us to make that process a LOT shorter by at least giving us the right questions to ask.

If not… well… at least we know we’re not alone.

Hi all: I can most definitely sympathize with all of you. I had serious neurological Lyme Disease for quite a long time, was then diagnosed with Fibro and was in a car accident last year. I could not take the Lyrica that the Rheumatologist prescribed, but I do take a prescription anti-inflammatory, along with a muscle relaxer, as needed, in addition to one 25mg amitryptiline at night before bedtime. Now, at least I’m getting starting to get some sleep and that is when the body trys to repair itself - during deep sleep.

I also take 50,000 IU of Vit. D/week, along with a super B-Complex, 1,000mg Vit C/day, Tumeric (great help for inflammation), Omega 3, and some other herbs and tinctures, as well. Still in pain 24/7 from the accident, but the regimen seems to help with the Fibro. And activity/exercise - definitely better for me versus being sendentary.

While it’s no consolation, as one poster mentioned, you are not alone. Very best wishes to all!

PS - The other things I use are a Thera-Cane and Thera-Bands, stability ball, weights, and definitely my tennis ball for those huge trigger points! :slight_smile:

it could be a Lupus thing. What is your Dr. saying?