Somewhere Inbetween... Fibro riders...

[Amwrider]

@trotification;4990731

I would suggest you look at things like menopause and obesity as a first line problem rather than fibromyalgia for heat sensitivity. Fibromyalgia is certainly a very real disease but too many people blame it for all syptoms leaving them with very limited treatment options.

Possibly, but I can tell the difference between a hot flash and general heat sensitivity, the sensations are different.

I have also lost a lot of weight recently, 50 pounds in about 10 months and have not noticed any difference since the weight loss.

Cold actually bothers me more than the heat (and I am still a “fluffy” girl despite the 50 pound loss). I will also add that no matter how hot it is outside, I NEED hot showers. Sometimes it is the only way I can loosen up my joints, especially fingers and wrists, despite the muscle relaxer I take.

…God, I live for hot showers…

[Wayside]

[QUOTE=Amwrider;4997511]
Yes :sadsmile:[/QUOTE]

<hugs>

Thanks, I’m sorry you’re going through this too, but sometimes it’s nice not to be alone :sadsmile:

[Penthilisea]

@trotification;4990731

I would suggest you look at things like menopause and obesity as a first line problem rather than fibromyalgia for heat sensitivity. Fibromyalgia is certainly a very real disease but too many people blame it for all syptoms leaving them with very limited treatment options.

Well, bless your soul!

If only I KNEW that at 28 menopause and a normal BMI when my symptoms started that it was STILL ALL MY FAULT FOR BEING FAT AND FEMALE, I could have saved my pain, time, energy, relationships, friendships, job, oh… you know, MY LIFE!

Gosh, I wonder why the many docs I have seen and worked with never mentioned or tested me for those types of hormonal and thyroid and endocrine issues? OH WAIT! They did. Multiple times.

FYI: Orthostatic intolerance and temperature dysregulation are actually clinical signs of fibro. (See supportive criteria symptomology section of the linked paper.)

Excuse me, if could still also be MS.

Apologies if this is an over reaction, I am not trying to imply that Trotification is trying to minimize any one person’s problems or diagnosis, only highlight the typical responses I personally receive on a daily basis.

[EqTrainer]

No kidding…

BMI of 21 here. I hear all the time “you can’t be sick, you look so healthy and you are so active!”

What people don’t realize is how much more work it is for someone with fiber to be fit and active.

[Teacup]

[QUOTE=EqTrainer;4998212]
hear all the time “you can’t be sick, you look so healthy and you are so active!”[/QUOTE]
Same here. I get a lot of “you LOOK fine so you are fine,” when in reality I may look fine but doing something as simple as folding laundry feels like it’s killing me. Sometimes I feel people don’t believe me because what was fine to do yesterday isn’t fine now, but tomorrow it may or may not be okay.
There is something wrong with me, I don’t like to talk about it, I really dislike it when people are skeptical, and I don’t like to come across as whining - so I do the work and pay for it later.

I exercise regularly to help with the pain, but at the same time, it also causes pain.

[Auventera_Two]

Obese and menopause hu? I assure you that neither is my problem. And believe me, I’ve been to doctors and had tests run for YEARS. I’ve seen specialists and more general practitioners than I can count. I’ve had enough tubes of blood drawn to suppply a small country for a year. I’m accustomed to going in and having 4-6 tubes drawn AT A TIME. I’ve had enough radiographs done that I probably glow in the dark. I have been tested repeatedly for every type of infectious, inflammatory, and hereditary issue imaginable.

I have had extreme pain and exhaustion for years and couldn’t figure it out. Finally I found a doctor who tested all the fibro trigger points and I was nearly in tears from the pain. Since I’ve been on medication, my symptoms have improved significantly. I still have flare ups during times of high stress but things ARE getting better.

My #1 problem right now is my big black dog with the baseball bat for a tail. He wags his tail so vigorously and when it whacks me on the legs, it nearly sends me down to the floor in pain. I’ve gotten scared of being around the dog’s tail. Especially when I get home in the evenings and he is SOOOO excited to see me. I dread coming through the door because he’ll be spinning around and the tail is like a weapon on my legs.

People who don’t live with this don’t understand what it’s like.

I’ve had to drop my hoof trimming clients whose horses don’t STAND and STAND WELL. I can’t tolerate horses taking pot shots at me or jerking their legs away. The pain I feel is so intense I want to be physically ill.

I do also have a joint hypermobility problem that I’ve had since a kid. I’m not double jointed but my fingers bend over backwards, and I have scoliosis. Couple that with a broken pelvis and I have a good bit of pain to deal with every day. Ugh its not fun.

[Wayside]

[QUOTE=Auventera Two;4999265]
My #1 problem right now is my big black dog with the baseball bat for a tail. He wags his tail so vigorously and when it whacks me on the legs, it nearly sends me down to the floor in pain. I’ve gotten scared of being around the dog’s tail. Especially when I get home in the evenings and he is SOOOO excited to see me. I dread coming through the door because he’ll be spinning around and the tail is like a weapon on my legs.

People who don’t live with this don’t understand what it’s like.[/QUOTE]

It’s sad when the things that should bring us joy cause us pain

These days having the cats knead on my lap when I pet them is absolutely excruciating. It’s so frustrating, because I want to hold the cats on my lap, and pet them, and have them enjoy it enough to start kneading, but I just can’t tolerate the pain of them doing it <sigh>

[Across_Sicily]

[QUOTE=trotification;4990731]
I would suggest you look at things like menopause and obesity as a first line problem rather than fibromyalgia for heat sensitivity. Fibromyalgia is certainly a very real disease but too many people blame it for all syptoms leaving them with very limited treatment options.[/QUOTE]

Awwww you are cute… who knew you could have menopause in your early 20s, and that having a normal BMI really meant I was obese?

Thanks for informing me! Now I sure do know better. :mad:

[Amwrider]

@Auventera Two;4999265

My #1 problem right now is my big black dog with the baseball bat for a tail. He wags his tail so vigorously and when it whacks me on the legs, it nearly sends me down to the floor in pain. I’ve gotten scared of being around the dog’s tail. Especially when I get home in the evenings and he is SOOOO excited to see me. I dread coming through the door because he’ll be spinning around and the tail is like a weapon on my legs.

People who don’t live with this don’t understand what it’s like.

I’ve had to drop my hoof trimming clients whose horses don’t STAND and STAND WELL. I can’t tolerate horses taking pot shots at me or jerking their legs away. The pain I feel is so intense I want to be physically ill.

I do also have a joint hypermobility problem that I’ve had since a kid. I’m not double jointed but my fingers bend over backwards, and I have scoliosis. Couple that with a broken pelvis and I have a good bit of pain to deal with every day. Ugh its not fun.

I am so sorry A2, gentle hugs to you.

Today I planned to sleep upright in a chair, I am having bedjacket pains for the third day now and cannot get comfortable at all. It even hurts to breath. I tossed and turned last night trying to find comfort which probably made it worse.

So I sit here in a soft cushy leather big chair and I am feeling my seat bones throbbing so this may not work either.

[pintopiaffe]

he, he… I’m not going to bother going back a page or two to find trotifications post. Don’t need to. :eek: :lol:

I am the FIRST one to blame mentalpause and obesity. I far, far rather think that my ‘foggy brain’ will clear up once the hormones straighten out. And I have gained 30lbs + since January, while still eating 800-1200 law carb/high protein/high fiber calories most days, with the occasional ‘binge’ up to 1500, once every two or three weeks. I manage my own 6 horse farm… alone… so yeah, I definitely blame the obesity.

Wayside–wonder if it’s the weather? My neck has been just stupid. And while we finally have the most STUNNING weather, the High moved in pretty fast. I dunno. I can barely walk the day after lessons (teaching.) I can suck it up and push and DO a big physical day, like teaching 4 lessons/riding two… or a show or such… but then I’m lame for 3 or 4 days following, despite rotating NSAIDS every 2 hrs.

I’m coming off my Cymbalta, for a trial. Will go back on if needed, but I’d like to be off it. I’m terrified of the intolerance to heat and flop-sweat in KY in Sept for WEG. It’s one thing here at home where I can wear a cotton jumper sundress (and nothing else :eek: :lol: ) to do chores etc., while I am enjoying my own personal niagra falls… I really can’t deal with it when I have to be performing in costume etc. We’ll see!!!

I think for me, the hardest thing is choosing to move rather than sleep. I feel like I don’t get enough quality sleep (mids doesn’t help one bit) so days like today, after 5 hrs of lightish sleep, I got up, fed/watered/swapped pastures… and went back to bed as I had 5 hours before I had to get up and get ready for shift. Of course, I didn’t fall asleep until I had less than three hours… so probably would have been better use of my time to walk or ride.

Would love some inspiration on that… or a kick in the backside.

[Penthilisea]

No idea for inspiration, sorry. Definitely will utilize anything offered.

However, today was my first aqua aerobics class at the local scuba/swim lesson place. It’s a VERY small pool/facility, however all clean and modern etc.

My mom accompanied me, and the other students were all close to her in age. And every single person there was able to do more then I could, as evinced by my turning red and sweating throughout. Thats what not doing anygthing for 18 months gives you. And it seriously wiped me out. We’ll see when/how/if I sleep tonight.

The focus was stretching and strength, rather then on speed or extremes of flexibility. As I said, I did get sweaty, but I was never out of breath, nor did I take any big breaks.

Does anyone else do these types of classes with any regularity? Especially in light of today’s press release on the use of tai chi to help with fibro- I don’t have the accesss to a TC class, but I think water aerobics with the low impact and steady speed will substitute?

[haligator]

Not Much to Say, Really, but…

Hi All,
I guess I am just SICK of having Fibrolmyalgia and Trigeminal Neurologia. SICK of it - at the end of my rope.

The ‘fun’ part of Fibro is the never-ending changes in symptoms - oops I’m hot, two minutes later I am cold; my hips won’t move oops now my hands are frozen. I can’t put on my shoes because my ankles won’t bend. Where are my glasses? I’m in immense Fibro Fog and grab dog food (yep, dog food) instead of my bifocals.

Hmmmmm, can I judge this weekend four hours away? I honestly have no idea because of the constantly changing nature of the Fibro Beast. And, thanks - I’m glad I look okay but if I looked like I felt I’d be a hideous troll with a limp. And, I may not remember your number but I’ll have Pedigree dog food for you!

And because I am 25 pounds overweight and can’t exercise enough most days IT IS ALL MY FAULT.

Do I sound pissed? You bet I am.

I’m sorry I just needed to vent this morning.

Hallie I. McEvoy
Racing Dreams, LLC (have wandered over from the Racing Forum)

[Wayside]

@haligator;5044739

I’m sorry I just needed to vent this morning.

No need to be sorry, venting is good!

I’ve also ending up with random object that are in no way related to what I was actually trying to get. Or I put things in completely stupid places. Thanks again, wonderful barn owner, for pulling the jar of Bickmore’s gall salve out of my horses feed tub before bringing her in.

[pintopiaffe]

Penth… I’d LOVE to have something like that available. Alas… I am as rural as rural gets, and even the public outdoor urinal–I mean swimming pool–closes this week. :lol:

And, I may not remember your number but I’ll have Pedigree dog food for you!

This made me smile. You’re not dead yet when you still have your sense of humour.

I HATE the ‘fog.’ Short term memory? What memory? Short term what? What are we talking about?

This from the woman who used to remember a license plate mentioned once on the (police) radio two weeks ago, and remember who ran it and where it was and why they ran it and how exactly it might be involved in tonight’s hijinks…

I can barely remember my OWN license plates now, and they are vanity plates. :dead:

It would help if I were more organised. But I like my clutter, mostly. It used to be when I’d clean and put everything ‘in it’s place’ was when I’d have trouble finding things. Now I have trouble finding things I JUST PUT DOWN FOUR SECONDS AGO.

I’m off the Cymbalta, and the critter knawing under my shoulder blade is back already. Have a new PCP, and she actually seemed to listen to me… we’ll see. I feel like if I could get the thyroid back on track to begin with, as a starting point, things might go a little better. We’ll see.

I know I will make it through WEG on sheer adrenaline. I’m terrified about how long I’ll be down/out afterwards. :eek: :uhoh:

[Amwrider]

@Wayside;5044889

No need to be sorry, venting is good!

I’ve also ending up with random object that are in no way related to what I was actually trying to get. Or I put things in completely stupid places. Thanks again, wonderful barn owner, for pulling the jar of Bickmore’s gall salve out of my horses feed tub before bringing her in.

:lol::lol::lol:

been there, done that.

When I was packing up my house to move I found a brand new container of drill bits that I had purchased a couple of months prior. I found it in the linen closet… why I put it there is anyone’s guess, they were meant for the barn.

[TimelyImpulse]

Anyone notice having fibromyalgia can be expensive? I just had my 6 month dental check up, and have $5K in dental work required due to fractured teeth from grinding them. Yes I have a mouthguard. I’ve had some really bad flare ups in the last few months, and the pain has been pretty bad. I can deal with it during the day, Darvocet has been great with that, but I guess at night it just gets free rein. Crap! And I need a new saddle!

[spook1]

Hi All,
Can anybody tell how SAVELLE is working for you? I go back to the DR. in two weeks and i have to do something different. My Dr. has me on Flexril and Napersyn (sp?). and I have issues with the flexril…it makes me feel 10 times more tired and sluggest. I cant take on days I work because with my type of job I can not be sluggest…lol.

I have read up about Lryrica and Cymbalta and of the two I would lean towards Cymbalta. I would put a poll to see what the general consensus is on all of them…but I have no idea how to set up the poll…

I am at witts end with it…I have at three MRI and blood work as much in the last yr and a half…and aside from having a severe case of Lyme I guess I have to resign myself to the fact that Fibro is real…occupational hazzard for me to except things I can prove…lol:lol

Thanks

[system]

I am just starting to read this thread but I am so glad to have found this group! Lots of days I feel like I am the only fibro person and no one understands. To the OP and others of this thread, thanks for letting me know I am not alone.

[system]

Oh and to answer on the Cymbalta vs Lyrica… been there done that one both. I had family members threaten to stop talking to me when I was on Cymbalta. It helped for a short period of time but I turned into a raving witch. Lyrica helped some but with no insurance I can’t afford it. I have yet to try anything that has helped enough for me to ignore any side effects from it. It seems I am either in pain and exhausted or in a fog and still exhausted.

Since I was a child, I have been diagnosed with ADHD, migraines, depression, dysthimic disorder (long term depression), IBS, Fibro…on top of a 23 degree curve in my spine from scoliosis and a reverse curve in my neck. If I were a horse, I would have been put down by now! Personally, I think Drs don’t know what they are doing…

Now, I am doing weekly massage thanks to bartering with a client and while it hurts like heck, I do notice a difference as long as I stay consistent.

[Wayside]

[QUOTE=spook1;5057168]
Hi All,
Can anybody tell how SAVELLE is working for you?
Thanks[/QUOTE]

Savella turned out to be my drug of choice, so far. I tend to get very drowsy and sleepy and gain weight on anything that has the possibility of having those side effects, so Lyrica wasn’t likely to be the best option for me, though I haven’t tried it.

Tried Cymbalta, and was very sleepy, gained a bunch of weight, and had all sorts of weird hot flashes and night sweats. It works wonders for a lot of people, just wasn’t working for me.

The nausea from Savella can be problematic for a lot of people. Even now if I don’t eat a solid meal right when I take it, I’ll get nauseaous. If I try to take it on an empty stomach, I’ll be vomiting. It raised my blood pressure, but mine was low to begin with, so not a huge deal.

But the Savella made a significant dent in my pain without making me sleepy, and as long as I remember to eat when I tae it, the side effects are pretty minimal for me.

PT has also helped a lot with the pain, and I just had my SI joint injected.