Somewhere Inbetween... Fibro riders...

[pintopiaffe]

No I don’t think you’re crazy. You’re sort of close enough, I might have to come visit your PT for an excorcism… I mean, extermination… :uhoh:

SERIOUSLY. It’s a fibro thing. WOW. That’s encouraging believe it or not, because the disks/spine prognosis wasn’t all that happy… if my spine isn’t falling apart and it’s a fibro thing… well, we can figure that out eventually.

Now I am having a date with some lovely flexoril and hope it’ll scare that critter off while I’m unconscious for about 8 hours!!! :lol:

[Piatt_Farms]

Hell you’re not crazy…actually I’m wondering if your PT has ever wanted an all expense paid trip to see OKC. When I think of all the money I’ve spent on medication to make that area of pain go away (and all of the damage it has probably wreaked on my liver/kidney/intestines—my dad’s in the medical field so he LOVES to tell me these things), paying someone for a one time visit seems like a much more worthy cause.

PP- yup, it’s the exact same place you are describing. When I was in my last year of high school and during college, it was torture because all you do is sit and write. I would get spasms that would originate from a “knot” under my shoulderblade go up my spine and similtaniously go across my shoulder and down my arm to my wrist, making it darn near impossible to to write or take notes. Any class longer than an hour was just torture.
Those stupid SAT’s and ACT’s you are suppose to take? Yup, that sucked…to put mildly.
Job wise- I’ve accepted that I will never be a secretary or anything that requires significant amounts of time in front of a computer or writing, but luckily for the moment I’m gainfully employeed on a job that requires equal amounts computer and conf calls. I do most of it via speaker phone because I can’t hold the phone under my ear (I can bend my neck and arch my shoulder to hold it there, but I will regret it later…usually for days), so I’m good for now.

[EqTrainer]

Well, he was considering getting into some sort of PT for horse people. And his name was Mike. The first time I saw MedicalMike post on here, I wondered if it was him!

So who knows. But he really was amazing and that was the only time he got voodoo on me. As I am typing this I can feel that spot and exactly where the beastie lived… the spot is thankfully empty.

PP - flexeril and activan at night is the original fibro cocktail. Flexeril for the body, activan for the mind. Nothing I have ever tried has ever worked better. I have to take it religiously - no skipping a night - as I have a tendency towards being a night owl anyway. If I don’t sleep, I will crash.

And perhaps of interest - I was taking gabapentin for a while for a particular neck issue that was nerve pain… after a few months of it being gone, I quit taking the gaba and the pain is STILL gone. Hurrah for that, huh!!!

[tollertwins]

Neck injury to fibro? Yep - that’s when mine started…Altho it was a while after after somebody told me to stop exercising. My PT’s comment was that my spine basically started to collapse because of lack of muscle tone.

There is apparently some really big neural junction in the neck…squish it and everything else kinda hurts, too. The PT is trying to get me to read a book called ‘Explain Pain’ that is relatively easy to read and appears to have a lot of good info…But since I’m taking vicodin waiting on a hip replacement I don’t have enough brain to get through it.

Also - I have that knot, too! It only gets bad now when I use the mouse too much. PT called it ‘T4 syndrome’…right at the bra line and almost under the shoulder blade.

I used to have a rib actually be subluxated that would really aggravate it. She’d have to (literally) pound right at where the top rib kind of joins the collar bone to get it to go back in.

The other thing is that there are a couple trigger points in the big neck muscle in the front - the one that I can neither pronounce nor spell. Both PT’s would put pressure on that muscle - and YEP! Referred straight to that knot under the shoulder blade.

A LOT of Pilates has really helped with that overall.

[Penthilisea]

Another theory proposed is that Fibro is a form of Endorphin Deficiency Syndrome. IN other words, your body is getting the same input everyone else gets, but the chemicals that ought to mediate/ameliorate everyday sensations are low or missing, producing pain, discomfort, tiredness, etc.
I don’t know how much water this holds, but it might account for the group of fibro folks helped by narcotics or anti depressants (myself included).

[Piatt_Farms]

Has anyone tried Lyrica? I’ve been having more bad days then good brought on by some changes around here (more stress) so I’m thinking about giving this a try.
It’s either that or the local moraphine dealer on the corner…:lol:
kidding

[pintopiaffe]

I’ve been scared of Lyrica because a side effect is weight gain. I’ve already gained back 15lbs due to having to stop one of my diabetes meds (insurance)I’m TERRIFIED of ever gettng back to where I was.

I also wonder about adrenaline/adrenal fatigue. Some Docs “believe” in it, some don’t. I spent 15 years in live TV, (news, sports, things like NFL on NBC) and graduated from that to being a 9-1-1 Dispatcher, then a Cop. :sigh: Lots of night shifts and early mornings etc. etc. Every shift has some ‘rush’ of adrenaline, some for hours on end…

I dunno. Who else is forecasting this next storm though? :lol:

My biggest thing right now is adjusting back to 2nd & 3rd shift (and rotating) after being a day person since July. That and the cold. Damn fingers and toes feel like they’re frostbitten for the first 15 minutes I go outside. Hurt like the dickens, and eventually warm up and are OK If I persist. I wish I knew what THAT was all about. :mad:

PT called it ‘T4 syndrome’…right at the bra line and almost under the shoulder blade.

I used to have a rib actually be subluxated that would really aggravate it. She’d have to (literally) pound right at where the top rib kind of joins the collar bone to get it to go back in.

The other thing is that there are a couple trigger points in the big neck muscle in the front - the one that I can neither pronounce nor spell. Both PT’s would put pressure on that muscle - and YEP! Referred straight to that knot under the shoulder blade.

This is SO interesting and helpful! I am printing this thread out to bring to my Sports Massage Therapist. I wish-wish-wish she was covered under Insurance, I can’t afford to go enough to really fix things… but she makes them better, that’s for sure, so I’m hoping to suck it up in the next week or two and get a session in. Been thinking of getting to the Chiro too, just for a ‘tweak.’ Doesn’t feel like anything’s really out, and I don’t want to do the whole X-ray/2x week for 6 weeks thing… just want to be cracked. :lol:

[Penthilisea]

Lyrica- I had to work up to a fairly high dose before I had effects. However, it is worth it to me- I haven’t had any weight gain. I take 150mg 1x per day, and it really helps with the stiffness and soreness, but not with any breakthrough pain. I do reccomend folks try it, and work up to a high dose before you dismiss it. Side effects are sleepiness, and it can make you feel “high” for the first week or so.

[Piatt_Farms]

I had to work up to a fairly high dose before I had effects. However, it is worth it to me- I haven’t had any weight gain. I take 150mg 1x per day, and it really helps with the stiffness and soreness, but not with any breakthrough pain.

Thanks, this is really good to know. Despite being small, I have a bizarre resistance to certain meds which tends to freak the dr’s out, so it’s good to know that you experienced the same thing. …and honestly, I would love to feel “high”, it would be a nice change from literally dragging myself out of bed, stiff, sore and bleary eyed at the beckoning of small kids.

For the last couple of days the fingers of my right hand have been SO stiff and sore. It hurts to bend them in to touch my palm or extend all the way…I couldn’t figure it out until I got in the car and realized that the otherday when I drove home though a mild snow storm I had been gripping the steering wheel more tightly than normal
Seriously? Now I can’t even hold onto the steering wheel without having pain for the next 3 days? What will it be like 10 years from now? The slightest weather change causes pain in my ankles/knee’s and wrists that wakes me up in the middle of the night and makes it hard to go back to sleep…
Honestly these are the things that scare me to death.

How are all of you coping?

Forgive me, I’m probably having a weak moment brought on by, yet more stress in my life and need a virtual shoulder to cry on and seek wisdom from.

[EqTrainer]

Go ahead and cry, we are good at handling that…

my hands have been really bothering me too. At first I thought it was because I am trimming more but then I realized it has nothing to do w/anything at all. I’ve been paying my 10 year old son to rub them and that helps more than anything else…

I wonder, too, where this is all going to end up when we are old. Maybe we need to start thinking about the Retirement Home For Old Fibro Riders.

[pintopiaffe]

Aww, Piatt… 's ok. WE get it. That’s why this is so helpful. Just when you think you’re crazy, someone pipes up and says “yah, me too.” :sadsmile:

Hm, EqT, I’m up for it. We would, of course, have to have an indoor, and I think we’d have to have PTs, MTs, Chiros etc. on retainer, visiting on a regular basis, for both us and our equines.

We’ll all meet at the end of a lesson day in the sauna or hot tub, where we can relax away our aches and enjoy a nice glass of whine…

You’re right though, seriously, I do wonder how long I’ll be able to keep this up on my own. But that’s also why I’m breeding easier to ride backs still with nice gaits.

[Bearskin]

So happy to have found this thread. I am sitting here, continually tearing up as I read, trying to deal with today’s frustration and pain. My fibro is trauma-induced (3 back-to-back car accidents where I was rear-ended). I have cervical and lumbar disk isses, had torn thoracic rib capsules, kad,torn sternal cartilage, TMJ issues, migraines, vertebral bone spurs, and the list goes on. I am currently a pro, but mainly deal with lower-level client horses (thank goodness my clients are sympathetic). Ironically, I do better being able to ride consistently, although my riding days are definitely numbered. If I do not ride for more than 3 days in a row, I suffer much more and am almost unable to walk due to shortened stride (piriformis implications?).

There are several days where the “I really overdid it today” thing is prevalent. The guilt I feel over how my medical issues affect my husband and young son are probably even more traumatic . . . I know they must get tired of dealing with it too.

So . . . has anyone taken Pristiq for their Fribro? It is touted as a timed-release dose of serotonin and norepinephrine to deal with the pain. Definitely helps me to sleep better, but the side effects are a PITA (some fuzziness–have the fibro fog anyway, decreased libido–forgot what that’s all about anyway, etc), and it is expensive (even under insurance).

Would Savella be a bette choice? Also, what is “soma?”

Also, for those considering Lyrica, my doc put me on Neurontin (generic is gabapentin). The main difference there is that Lyrica again is time-release, and Neurontin isn’t. HUGE help with the pain, but the initial titration can be difficult as it is very trail-and-error to find what wowrks for you regarding dose and timing (it only lasts a few hours). Major benfit is that it is not metabolized in such a way that effects/damages the liver.

I just hate being on these meds daily in order to even thinking about functioning. Having a 4 yo little boy who is super active can also be a challenge when dealing with “better living through chemistry”. The super-cold winter we are having definitely is making things worse all the way around. Major pity party going on at the moment . . .

[Bearskin]

Bump – no one for “soma”?

[tollertwins]

I do SOMA…I like it much better than ‘regular’ muscle relaxants.

It isn’t so much as muscle relaxant as it is a ‘central nervous system’ muffler. It puts me into a really nice sleep (altho some people can take it and stay awake - my liver is apparently a wuss).

The Dr’s are not really sure how it relaxes muscles - it doesn’t work on them directly. Something about making the rest of the body relax makes them relax as well.

Flexeril and stuff make it really, really hard for me to get out of bed in the morning.

Pinto - I also got a ‘couch’ hony to ride…

[doublesstable]

After reading all the posts; I had to reply - DITTO. It’s like I wrote all this stuff you all wrote. I want to cry!! I was diagnosed with firbro last year.

It took two years of diagnostics and doctors looking at me like I was a nut. I have had hot flashes and body pain like I just ran a marathon for over 15 years and I just thought it was because I am so active and I was just getting old… But now at 45 I cannot take it anymore and it has affected my life and I needed help.

I was in an accident 20 years ago where I had head trauma. I also, when younger had mono. (interesting)

I keep quite about my constant pain because I don’t want to sound like a complainer to people, know one really understands… but hearing your stories and reading about your pain I can only say - YES THAT’S IT!!!

I hated bugging the doctor but I just knew something was extremely wrong. I had to explain to this doctor; I am a pretty tough gal; I lift 80 lb bags of feed; stack bales of hay, trim my horses hooves, etc… I have had five kids and the only time I have been to the doctor other than to have my five kids was when I had my gallbladder removed and when I had a ruptured tube.

My doctor put me on a low dose of Amitriptyline. I have been on it for about 5 months and it has helped me. The hot flashes and cold spells when sleeping are much less. The sharp leg pains; expecially at night are much better. And I do seem to sleep better. I have not experienced any side affects. When I ran out of it a few times I got the leg pains again and didn’t sleep at all. Oh and I did have hair loss but not anymore.

I still have muscle and joint aches/pains and I get that bed jacket pain some of you were talking about. I cannot even lift my arms to put clothes on… weird. The other day my wrists hurt SO BAD I grabbed my hubbys vicodin… I said no one should ever be in this much pain… it helped.

I have had this so long I am just used to it. I always wondered why I wouldn’t sit very long… it hurts so much. Now I know and want to do what I can to not let it get the best of me.

I still ride and compete in Hunters. One of my horses I may start Jumpers if my body can take it. I try to stay active but curling up on the bed often sounds better…

Thanks for listening and I hope we can all help eachother live a more comfortable life.

I do like the idea of eating more chocolate

[tollertwins]

FWIW…on days when I hurt really bad I found that sitting a nice slow jog w/o stirrups would help.

Mentioned it to the PT and she said ‘yep - open chain exercise’ whatever that is.

Also - these infrared heating pads are kinda pricey, but so amazing that I’m going to get an infrared sauna one of these days. Those are (relatively) inexpensive - 2 person is less than a nice saddle.

Thermotex heating pad:
http://www.thermotex.com/index.htm[/ur

Mini-sauna:
http://www.infraredsauna.com/

I don’t remember if that is the sauna I was looking at or not, but gives you the basic idea. Also - there is one that makes a single person model that you lie down in…

ETA - these are the saunas that I was looking at - they have completely non-outgassing designs.

http://www.soleilsaunas.com/faqs.htm

[pintopiaffe]

oh, WOW TT–the SHOULDER PAD… OMG… I’d about kill for one of those tonight!

I’m flaring, anyone else? Been almost a week now. Not sure why. Two migraines too. But arms/shoulder just ache & ache…

I try to stay active but curling up on the bed often sounds better…

DoubleS, you got it!!

My problem in flares is getting up in the morning. When I’m finally warm, relaxed and not hurting, it’s SO HARD to get up.

Any suggestions for getting going? I know we’ve talked about it a little bit before… Hot shower doesn’t work for me–makes me sleepy (plus my hair will freeze when I go out to do chores) It’s more like I feel like I need to set my alarm, drink an energy drink, go back to bed for two hours THEN get up… :uhoh: Seriously, do I need to set my alarm or take the Cymbalta a couple hours before I need to get up?

I have to bite the bullet and go to the Dr. again soon–before Insc kicks in, as my fingers are falling asleep all the time. I’m sure it’s related to the shoulder/neck/head pain, but I feel like SUCH a hypochondriac! This is almost constant enough though to frighten me into going. It was one thing when I was laying down or typing… it’s something else when it’s almost constant, regardless of what I’m doing… and DOH–I’m sure that whatever is causing that is related to the cold/reynauds-like stuff! DOH!

Hope everyone’s hanging in. Let’s keep this thread going as a place to come comisserate, check in, post new news, etc.! It’s Very Good to NOT be alone!

[doublesstable]

yes Pinto, SUPER BAD TODAY… it’s been raining and I was so bad today I finally had to take vicodin. I feel horrible!!
migraines and all. Hubby has migraine meds but I cannot take them - it makes me feel like my heart is going to beat outside my chest.

pinto I totally understand… I have everything you just said… absolutly everything and feel like you do…fingers falling asleep, the head/shoulder/neck pain SO BAD… but it’s real. It hurts. My elbows hurt. My knees hurt. (thanks for listening.)

I have been getting up every am for the last few weeks about 6:30 getting horses fed and cleaned, kids off to school, and doing laundry and paperwork in the office. It’s been so wonderful being able to do this and NOW… today and yesterday I woke up at 9:00 I couldn’t get out of bed… I told my hubby; it’s a flare up…

I am so glad for this thread too. I am sorry you are too having a flare up. I am going to try to take a warm bubble bath after I feed the horses.

I hope you feel better. If you find something that works for these kind of days… I want to know!! :yes:

[pintopiaffe]

Well, they do say misery loves company…

And while I don’t wish this on anyone, it at least makes us feel less crazy, 'eh?

I felt like the world’s biggest whiner a year ago when I really started investigating things. I felt like a hypochondriac.

But I KNEW that something was wrong, and this wasn’t ‘normal.’ Of course, the path of ‘diagnosis’ was to rule out other stuff…

DoubleS, what you and others say is SO true–that we haul grain and lug water buckets and do what has to be done, and so sometimes people see that as ‘well you can’t have something chronic’ or ‘you can’t have chronic pain.’ (and I KNOW this applies to others as well–not just Fibro/CFS)

What they don’t realize is that the PASSION for horses overcomes even the worst days in most cases. Many days, it’s the ONLY reason I get out of bed.

Don’t get me wrong, the Cymbalta has given me back much of my life. Guiafenesen is helping too, (even if it’s just with chronic allergies/sleep/analgesic–it works and I’ll TAKE it) But when you hit the bad days, THANK GOD for horses. :sadsmile:

I know I am stressing about my bebe in KY–of which I can do nothing but pray and ask for prayers/energy/support… but this started before. There are other things going on too which are huge stressors… but honestly? I think it’s the damn barometer.

WHERE on this planet can you live with the least changes in barometric pressure?

Hang in there DoubleS. You are NOT alone. Or nuts. (or, well completely( nuts–the whole ‘horse’ disease… that’s different :lol: ) Thank GOD, neither am I.

[tollertwins]

Its the weather fronts…my PT said that anybody who is sorta broken really flares during major weather changes, and the cold doesn’t help, either.

I’ve taken to trying to find (reasonably) inexpensive/on sale merino long underwear and almost always have that on as a base layer. The back-on-track shirts actually help if they are under something that keeps them close to your bod, but the long sleeved ones dont fit me.

If you can get a couple icebreaker long underwears shirts you can do the one to wash one to wear thing…since they don’t build up odor at all.

They are still not cheap on sale - but save my butt in the damp cold. Both sierratradingpost.com and altrec.com typically have some closeouts.

I get the bodyfit 250 to wear under other stuff, and get it kinda tight (which it is anyhow).