I have a new found problem. Does being in the hot sun affect you? It seems if I am out in the heat I get headaches… and then feel like I am having a relaspe = get sick feeling.
I know the simple solution would be stay out of the heat… But my horses are out there…
[QUOTE=TimelyImpulse;4746327]
I have, as of today, been formally diagnosed with fibromyalgia. The Dr. gave me Elavil— I read the insert/scare the crap out of you card, anyone have any anecdotal experience with it you’d like to share? :([/QUOTE]
I am so sorry you are dealing with this. Anyone that is dealing; understands this a frustrating condition.
It would be better to have something they can remove like a galbladder…
I have no expereince with Elavil but I do with other products that make me sleep in. I stop taking them so I can get up in the am then my symtoms become worse.
I know diet is a big factor and I will be experimenting with that very soon. It feels like I am too busy to eat right… ugggg…
Please keep in touch to let us know what works for you or if you just want to vent how you feel…
Re: Diet
Many fibro folks have multiple chemical sensitivities. MSG and Artificial Sweeteners, including but not limited to aspartame and sucralose, seem to exacerbate symptoms.
Vitamin D deficiency can mimic fibro or make symptoms worse, so it is recommended to have a yearly blood test done for levels, and if necessarily prescription supplementation is advised.
Thermal regulation issues are also common. I LIVE on a heating pad in weather below 60 degrees, and in the summer have to purposefully drink more liquids and take frequent rest breaks.
More info as I think of it…
Just did some fascinating research the past few nights on the thyroid-fibro connection…
There’s a point where supplementing T4 only makes you have even less T3, and it’s a vicious cycle.
So many of the symptoms coincide… I’m going to keep researching, but it appears that there can be significant improvement if T3 is supplemented even though TSH is normal.
We’ve been having 40 degree temp swings day-to-night, and some big windy fronts moving in and out quickly. Those suck.
OTOH, the past week or two have been in the high 40’s and even 50’s, and I wish I could live somewhere where this was the weather year round. Sunny, warm in the sun, but cool enough for layers… happy horses, no bugs…
Really paradise for me.
ME! ME!
MSG gives me migraines, perfume gives me migraines, cleaning fluids give me migraines, cleaning gives me migraines (oops! that one isn’t related to chemical sensitivity, I guess…).
PP, what is t3?
I went through this…had trouble waking up and sometimes I would wake up and not be able to move…seriously, not sore, just felt paralyzed like something invisible was sitting on me and not letting me get up.
T3 and T4 are thyroid ‘things’.
:yes: What tt said.
So, has anyone figured out how to wear a bra during a flareup? :uhoh: Between not being able to raise my arms to hook it… and the shoulder straps being EXCRUCIATING… tried the enell I got for work in one size up, and though it was better, even those straps hurt… 
SO, TMI time, here I sat, all 12 hours at work, in 60’s style rebellion, all wild and free… :lol: :eek: I am wearing my heavy ‘combat’ uniform sweater (military type) and this is the job where I do NOT walk or… do stairs… :uhoh:
Anyway. Had a fabulous day of sun and feeling fabulous and grooming everyone and riding two (lightly) and crashed hard the next day. Didn’t even think I over did. And a HUGE front with 40+ degree temp changes and 49mph wind gusts blew in… so I’m not sure I can blame overdoing. I just felt GREAT and nothing hurt… and BAM, lost the next day.
Do you ever give in and accept that you’re going to lose days? Or do you keep fighting and investigating and researching & hoping you’ll find an answer?
I had to completely and totally ditch the sports type bra’s. Put them on and the band would start driving me totally stark raving MAD!
Fortunately, I’m not that well endowed to start with, and the monthly ‘OMG WHERE DID THOSE COME FROM???’ times are over with, AND I have a horse that feels like riding a couch.
I just wear one of the things that’s supposed to be a kinda cross-over type bra.
Title 9 Funderwire’s.
It might be the wind, PP. The wind drives my fibro crazy.
Bras… omg. I have days where I simply cannot wear a bra, cannot wear a cami w/a shelf bra. There is something about the band that causes really bad middle body pain. Never found one that makes it any different if it’s a no-bra day. Thank god the girls are petite and have, for the most part, stayed where they belong :lol: layers are my friend…
so I went to an osteopath today. I had seen one in France before, it was great, he fixed a chronic lower back problem I had had for years and it has never come back. So I was… hmmm… enthusiastic. Anyway, I posted something about my neck on another thread but he has me on an amino acid program and is retesting my thyroid (apparently it has never been tested the way he wants it tested?!!) and checking my parathyroid (thank you FG, yes, he said it was on his list) and a bunch of other things… depending on what happens w/the amino acids I may try Cymbalta. Am going to have that horrific trigger point thing injected soon, probably next week.
I am reaching some sort of point where I just can’t stand the pain anymore. I don’t think it’s worse, I just.can’t.take.it. So here’s hoping that this guy has some help for me, lord knows my PCP has been useless this last year. She is officially fired as I found out that my old PCP, who was fantastic, is practicing again and local now!
Oh, EqT–will you keep us updated? PLEASE??
I went for blood draw today, and asked the nurse about thyroid, she looks–There is none. HELLO–we changed the Rx in the fall, have not restested since, I’m complaining of intolerance to cold, hair falling out, gaining weight and fatigue… and you didn’t order THYROID??? Grrr. Nurse said they keep the blood for a week, they got plenty and to have Dr.s ofc fax over the order and they’d do it. THEY’D BETTER!
I am so frustrated it’s not even funny! She completely blew off my NUMB hand and dizzy crap last appt. Both have resolved. Go figure. But I was worried. I’m not usually a dizzy person. And when your hand is numb 75% of the time… well… it’s a concern. Even for a hypochondriac.
So NOW I get to go in and tell her that I KNOW I’ve been exposed to lots of parasites–wormy cats & dogs and horses (was helping the friend with the glop of live squirmeys) and sound like a complete whack job. :sigh:
</rant> I just cannot believe she didn’t order thyroid. If anyone’s interested in some new info, Dr. John Lowe has a really interesting interview on About.com w/ Mary Shomon the Thyroid lady. He really feels that Fibro, CFS and even arthritis (any chronic inflammation, basically) can be helped by getting the thyroid working right again. I’m tending to believe him, as everything SO seems to go hand in hand…
Mother Nature decided she was pissed at us the last 2 days… so I havent had to worry about anything but feeding and mucking through mud… Started a nat’l thyroid support formula seconds after the blood draw… hoping for a break.
I get really inspired about training and riding and the way life is going. Then it just HURTS.
PP, you must be so frustrated. The guy I saw yesterday is pretty sure my thyroid is implicated, but hormonally? It’s going to take me a while to get my head around all of this. I do know that my thyroid has been tested over and over again and never been out of the norm, but he didn’t seem to think much of that and I know ordered different tests than what has been done before.
Anyway, I am really sorry that happened to you. When I find out what he tested, and what happens, I’ll update this. I go back next week. In the meantime I am on a really strict amino acid program which I think is pretty funny considering I am the Queen Of Tri-Amino :lol:
That IS funny!
I always thought it a hoot that a couple of my horses needed a strict low carb diet… and I’m diabetic.
Then again, if we would just treat ourselves as WELL as we treat our critters… :uhoh: :lol:
I really can’t wait to see her reaction though when I ask for deworming… :dead: :winkgrin:
Can’t believe I’m joining one of these threads but here I am I just got an official diagnosis yesterday after months of debilitating pain, headaches, chills, and fatigue. All bloodwork has been normal, including Lyme, I’ve had almost all joints radiographed, and have seen 4 doctors. I work a full day job, plus I trim horses part time - nights and weekends. I own 4 of my own and some days the pain is so severe it seems like an overwhelming task to carry out just one more armload of hay to the pasture. But somehow I manage to get through. I don’t know what brought this on but it looks like I’m in for a long journey ahead. I started on 10 mg. amitryptiline (can’t remember the brand name) and for the first time in 6 months I felt like I actually WENT TO SLEEP at night. The feeling of waking up this morning and not even remembering the night was amazing. Ordinarily I wake up 6 times for one thing or another and feel that sleeping is the hardest struggle of the whole day.
I’m glad to find this thread and appreciate all the good posts here.
That’s how I feel too. I can go to a barn and trim 10 horses, but when I get home I’m a zombie. I have to lay down and rest for 2 or 3 hours before I can go out to my own barn and do chores.
So I can always “get the job done” whatever needs to be done, but I have to go about things much differently. That’s one main reason I sought out medical help. It really scared me that my energy level and ability dropped off so sharply.
I agree with the poster also who said they unpack the trailer 2 days later. I can trailer somewhere to ride, but when I get home, there is no energy left.
[QUOTE=Auventera Two;4780020]
Can’t believe I’m joining one of these threads but here I am I just got an official diagnosis yesterday after months of debilitating pain, headaches, chills, and fatigue. All bloodwork has been normal, including Lyme, I’ve had almost all joints radiographed, and have seen 4 doctors. I work a full day job, plus I trim horses part time - nights and weekends. I own 4 of my own and some days the pain is so severe it seems like an overwhelming task to carry out just one more armload of hay to the pasture. But somehow I manage to get through. I don’t know what brought this on but it looks like I’m in for a long journey ahead. I started on 10 mg. amitryptiline (can’t remember the brand name) and for the first time in 6 months I felt like I actually WENT TO SLEEP at night. The feeling of waking up this morning and not even remembering the night was amazing. Ordinarily I wake up 6 times for one thing or another and feel that sleeping is the hardest struggle of the whole day.
I’m glad to find this thread and appreciate all the good posts here.[/QUOTE]
So you’re taking 10 mg of amitryptiline and not experiencing any of the grogginess upon waking? Lucky you. I wonder if it was the super low dose you were prescribed. What exactly did the Dr tell you the amitryptiline would do? I’m really curious because a friend was given the same medication and didn’t tolerate it so well.
A2, long term sleep deprivation can cause fibro-like symptoms. It can also, it is suspected, cause fibro. My sincere hope for you is that it is the former and not the latter. If it is fibro, just getting good quality sleep may improve your situation dramatically. Don’t panic yet!
Did they check your vitamin D levels?
[QUOTE=Parrotnutz;4749458]
What dosage was prescribed? I have a friend that takes it and it helped her a lot. Me, it didn’t help. Welcome to the wonderful world of Fibro <scarcastic> Only time will tell if the med helps and if not you try another.
Elavil is one of the oldest tricyclic antidepresents, also effective for pain. Like all meds, when dealing with Fibro, works for some and not for others.[/QUOTE]
25 mg/once per night. I tried it-- could NOT shake the morning grogginess, so now way can that work. Also, how on earth could I handle avoiding the sun while on it? I’m outside almost all day as it is, and got a burn yesterday while wearing 100 SPF. And yes, Neutrogena actually makes a 100 SPF product.
[QUOTE=Auventera Two;4780047]
That’s how I feel too. I can go to a barn and trim 10 horses, but when I get home I’m a zombie. I have to lay down and rest for 2 or 3 hours before I can go out to my own barn and do chores.
So I can always “get the job done” whatever needs to be done, but I have to go about things much differently. That’s one main reason I sought out medical help. It really scared me that my energy level and ability dropped off so sharply.
I agree with the poster also who said they unpack the trailer 2 days later. I can trailer somewhere to ride, but when I get home, there is no energy left.[/QUOTE]
It’s amazing you can work and trim 10 horses and still care for your own!!! Some days I can barely pick one set of horse feet.
Strange though, frequently, fibro symptoms creep up on you, starting with a twinge here and there, then the allergies, the depression, the pain. Yours sound like you just had an all out body whack!!! There are some conditions that sound like fibro, but are much more serious. Have you been checked for Arnold Chiari Malformation? It’s something they ruled out for me in an MRI.
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