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Somewhere Inbetween... Fibro riders...

Riders with Health Issues
#261

I will have to look into EDS, I have had some connective tissue problems in my feet and ankles for many years and I also think my knees and hips are involved, they seem to “go out” a lot on me.

This is how my low thyroid was finally diagnosed. The screening tests were always normal (TSH=N).I’ve always had hyperextendible joints and can do the Bela Lugosi creepy fingers, contort myself into weird positions, etc… But I went to see an orthopedic specialist about my constantly spraining and eventually frequently partially dislocating my knees, spraining my ankles, my back going out, my shoulders clicking, mt elbows hurting, etc. With low thyroid, your ligaments get loose, muscles get stiff and the result is frequent tears and strains during normal activities.

Ehler Danlos is rare. Low thyroid is very common, strongly associated with chronic fatigue and fibromyalgia, and the screening test misses about a third of us who are low. You need a full spectrum of tests ( TSH, T4/Free T4, T3/Free T3) to figure it out.

#262

The ride fixed my back???

Thanks for the go for it. Rode last weekend and it was great. Legs hurt like he!! the next day, but no SI triggers! The school horse I was on must be a chiro on his off days, 'cause my back hasn’t felt this good since January. Got TrP shots this morning in my arms and they feel better already. Thanks for letting me vent last week when I wigged out.

#263

Terrific!!!

#264

[QUOTE=red mares;5167203]
Thanks for the go for it. Rode last weekend and it was great. Legs hurt like he!! the next day, but no SI triggers! The school horse I was on must be a chiro on his off days, 'cause my back hasn’t felt this good since January. Got TrP shots this morning in my arms and they feel better already. Thanks for letting me vent last week when I wigged out.[/QUOTE]

AWESOME!!! That’s great! I’m so glad that it went well & that your back feels good!!

#265

Havent posted on this thread in awhile.
But needing a bit of a pick me up from people who understand.
I guess it was about 5 months ago my then husband and I decided to get a divorce. Since then I am the sole income maker. I had scaled back my work load to about 25-30 hours a week so I didnt push myself to hard. But had to go back to a full time (and some more) status to make ends meat.
A wonderful friend of mine offered to let me keep my mare with her for no charge so long as I helped out around the barn. It has worked really well and my mare is happier!
But the high work load plus normal day to day life is taking a toll on me. My fibro is flaring worse than it has since I was diagnosed three years ago.
So of course it is making it hard to work in both my jobs (I work as a lic. Vet Tech and equine massage therapist).
Add in the stress of trying to sell my house, manage my money, and keep my mare in work, and I am worn thin!

I am only on Prozac 20mg a day medication wise. I do take Fish oil, multi vitamin, and valariun root as supplements. Generally those all help me but with all that is going on I am not getting much relief.
Doesn’t help that I lost my insurance with the divorce so I cant afford to go to the doctor to try to add something to help with my pain and fatigue.

Though I did recently start changing the way that I eat. A friend and personal trainer suggested switching to a low inflammation diet. While it has been hard cutting out white bread, rice, sugars, and sodas I will say it seems to be helping. And to boot I have lost some weight!
I also decided to cut out all meats but fish. It just seemed my body was never able to break it down and process it. So I was always left bloated and icky feeling afterwards.
Overall I am adapting well to it, but I have really plan out my meals as eating on the go is impossible.

Once my house sells I think life will become more manageable. But in this day and age selling a house is not that easy! But only on month two of trying to sell. So I am not desperate quite yet.

Thanks for listening to me rant. ;p I am so glad this is here for everyone of us. It is hard when others just dont understand how it affects all parts of your life.

#266

Does anyone have problems with people simply not believing you? Someone bumped me and it just hurt so bad, my reaction was pretty much “Ow :(” and so the moron goes “No way that hurt!” and freaking digs her finger in right between the ribs. It made me pretty grouchy for most of the day.

When things are getting too difficult in a situation and it’s physically hurting, when do you tell people you need to stop? How do you explain it? Some days I wish I could just let others FEEL what it’s like to hurt so much.

CatOnLap, I had NO idea a low thyroid could cause ligaments to be looser. Do you have any articles about that? That’s really interesting.

In my own personal “history” my doctor feels my fibro is caused by pain from another health issue. I do take meds for thyroid and anti-inflammatories, but nothing for fibro.
I always kind of feel like I’m being a hypochondriac when I have my list of symptoms. But what if narrowing them down causes something to be missed?

#267

I just want to mention that I get to join the club, so to speak… I was diagnosed with Fibro a few weeks ago officially. Fibro was first mentioned to me 6 years ago when doing PT for a shoulder injury and the therapist kept finding me sore all over constantly and she thought I had it then. She fixed me up the best she could but I was there on workman’s comp with no insurance otherwise to pursue it. I now have insurance and have spent some time this summer trying to get myself fully vetted and find out what’s wrong with me sigh

I don’t want to be mucking about with this, but it sure does explain A LOT. So far I’ve backed off from working 48 hours a week to 40 and am trying to eat better. I’m also looking into getting an exercise bike or elliptical as I do feel much better when I can get to working out on a regular basis. The energy for riding the ponies has been in short supply. I’ve been doing ACTHA rides with my TWH mare and the only time I’m riding her right now is when we show up for a ride! Good thing she’s a smart pony :wink:

Medication, well the doc wanted me to go on Lyrica straight off but the insurance co. is balking at it so we started gabapentin. We’re working on upping the dose right now and I am having some bad headaches, given the time frame I think the higher dosage of gabapentin is to blame. I didn’t have these headaches with the lower dosages.

Well, that’s my report for now!

#268

Don’tcha hate that…or people that give you a big hug even if you ask them not to. They can’t understand how much it can hurt.

#269

It is good to at least be able to have answers for how you feel, isn’t it?

#270

(((Gentle hugs)))

#271

random thoughts-

  1. yes it’s true that friends/family may not understand. And unfortunately, there are still a fair number of health care professionals that do not acknowledge this diagnosis (although this is improving).

  2. I’ve not read all the posts but has Vitamin D been mentioned? Hypovitaminosis D distinctly worsens muscle pain AND falls risk. most folks could use at least 2000 units D3 per day.

  3. sleep sleep sleep…in fibromyalgia, many believe that appropriate diagnosis and treatment of a sleep disorder is primary to everything else. Probably the most common sleep disorder comorbid with FM is Restless Leg Syndrome, although often there is more than one issue (obstructive sleep apnea, delayed phase sleep onset, narcolepsy, etc).
    Bottom line is that pain treatment will never be satisfactory without adequate sleep quantity and QUALITY.

  4. The pathology of FM is probably not autoimmune. To date, no antibodies have been identified. Current thinking is that it is a central sensitization syndrome–pain is more readily transmitted via the spinal cord to the brain. Like an audio system, the volume of pain perception is amplified. Precipitating event is unknown, perhaps viral, physical/emotional trauma in a genetically predisposed individual. Growing pains in kids may represent an early manifestation.

If there is anything positive about this condition, it’s that it does not damage muscles/joints (just FEELS like it). Potential health consequences are due to lifestyle, deconditioning. Life spans are not shortened and in fact, it is one of the few chronic conditions that seems to improve as we age…but only if conditioning is maintained.

#272

I have always been very sensitive, anyone else feel like it started waaaayyy back? Like long before the regular pain and fatigue that is part of living with it…

For one thing, I have always been extremely cold sensitive. I was raised in central FL so attributed it once I’d moved to KY as just not every really having been exposed enough to get used to it but I’ve been through 15 years of it now and it’s just as bad (if not worse) as it was the 1st year. I also CANNOT stand any therapy involving ice- it causes me pain and that took some explaining when faced with it during my shoulder injury PT. Don’t even like it much on smaller sprains or swelling, have to have a ton of padding or I can’t sit through it.

Also, needles… I’ve always been the one who can’t stand getting shots. It’s not a “pinch” for me, it really hurts! Then I have a ton of residual soreness. Dentists were the worst cause even if they numbed me good, I could always feel the movement and the pinching (and the drilling would send me through the roof!). I just had a dental appt last week and it was sooo much better than they have always been which I am attributing to the gabapentin helping the pain.

Electro-stim therapies- again can’t do them! PTs have tried to and even on the lowest settings possible, it is a horrible experience for me and I refuse to have it done, I feel like I’m being electrocuted slowly!

#273

Im sorry to see all of us in the same boat but glad to read your stories, if that makes sense. Thank goodness I have my horses! I have been forcing myslef to ride one of my horses on the trails. I even ponied the 3 yo and that is going to be a viable solution until it gets too cold. I did discover that galloping literally kills me so no more of that! Vet prescribed walking, easy hills for my 6 yo so it motivates me. I am in incredble pain now as I did too much today, ugh! It will pass, tomorrow will stink.

I have the horse care thing down to a science so it is easy to do. I dont clean their areas every day anymore and thats just the way it has to be, they dont care!

I got off the Cymbalta due to worsening depression and man does my body hurt! I guess it was really working well! The depression and crying was horrible! Its a viscious circle! Grrr,

Thanks for listening, and thanks so much for sharing your own stories!

#274

CatOnLap, I had NO idea a low thyroid could cause ligaments to be looser. Do you have any articles about that? That’s really interesting.

Sorry, no I just took the orthopedic medicine specialist’s word for it- he was the one who made my diagnosis and got my doc to start me on treatment for it and it worked, so I ain’t arguing!

#275

Ultimate Charm, how much Cymbalta were you taking? and did you try it with Wellbutrin? Some people cannot tolerate Cymbalta by itself.

#276

[QUOTE=spookhorse;5174607]
Electro-stim therapies- again can’t do them! PTs have tried to and even on the lowest settings possible, it is a horrible experience for me and I refuse to have it done, I feel like I’m being electrocuted slowly![/QUOTE]
They asked me if I wanted to try this, but I declined because I’m too afraid of pain.
I like being cold, but not too cold, absolutely despise heat and get overheated easily.

#277

I find that I have very little sympathy for others now; OK, I didn’t have much before. I’ve got a hypochrondiac 85 yr old aunt who always has something wrong. She was trying to get someone to take her to the ER for hearburn last week. Thank God I’m not around her much, because having someone that age whine because they can’t do what they did 20 yrs ago drives me up the wall. At 35 I take more drugs than she does! The last holiday get together, I think I half way went off on her. With any luck, she’ll be sick for Christmas.

I went “home” for a funeral last weekend; 28 hours on a train over 4 days. While it was better than driving, I think there is a beating in the works very short order. Especially since when I wasn’t sleeping in some contorted ball, I was sewing. The thin little necklace I put on this morning is killing me. No way will my ID be around my neck.

But on the plus side, I got to drive my old mare (retired out there) and she was her rank old onery self. About killed 2 of us getting her harnessed and hooked. I wasn’t to sure she wasn’t going to put me in the ditch for the first couple blocks. OMG there’s a yellow line in the road! Mailbox?:eek: Huge combine working next to the road - no problem. At least I have plan C now (we are already on B) if my trainer can’t get the youngster working- bring the old witch back.

#278

I was diagnosed with fibro right before I turned 16 (lovely 16th birthday present, right?).

What is your greatest frustration?
I have arthritis and tendonitis in my legs, and severe back pain and muscle spasm. The chronic fatigue is probably my biggest set back. There are days where I can not get myself out of bed at 5:30AM to go take care of the horses. My major problem is weather, weather just about kills me. Any change of weather and it’s hard for me to move.

What have you found helps?
I take muscle relaxers and iBuprofen. It has helped a lot. I also see a chiropractor weekly (sometimes more or less). Riding bareback really helps my back loosen up, and then my joints in my legs don’t get irritated by having to use stirrups. I also have a massage chair (heated) that I use while doing computer work. I have an electro-stem machine at home that I use before bed, and it helps me sleep (weird, but it does).

What else?
I am on the wait list for the Mayo Clinic. My symptoms match up exactly with fibro, but I have other health problems that don’t. I’ve been diagnosed with fibro by 6 specialists, but my parents still want to be 100% sure that this is what I have.

#279

I’ve been having a lot of trouble with costochondritis and I’ve found that diclofenac sodium is AWESOME. I have very loose ligaments (fingers and toes bend all the way over backwards, knee caps have both dislocated multiple times, scoliosis, constant sprains, etc.) The diclofenac gives the most relief of anything. Vioxx was also awesome but that’s not available anymore.

I’m doing a 60 mile endurance ride this weekend and I have no doubts about my horse - it’s ME that I’m really terrified about. The level of pain I get is just indescribable.

#280

As far as it beginning early, I was one of those kids with growing pains and I was already an insomniac by nine or so. What breaks my heart is I see these issues in LMEqT also :frowning:

Something interesting happened to me when i had surgery two weeks ago. I had severe phrenic nerve irritation, not just shoulder pain, but my entire upper body was lit up with nerve pain. It was horrible BUT I did realize that I experience this pain on a milder scale fairly often but always assumed it was a fibro thing. maybe not.

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