Somewhere Inbetween... Fibro riders...

[Penthilisea]

Another example of treating ME like a horse…

So back when my TB was having vague troublesome issues with his back, he needed a nuclear bone scan, and voila, it showed the issue like wow!

Now, I’m having organ troubles of my own (though after 2 er visits and a slew of tests they still can’t tell WHICH organ) and I’m going in for a Nuclear test of my own! Its the same idea, inject me with a isotope and then “watch” how it is moved through my body.

On a lighter note, this fall weather has been terrific for my fibro symptoms, I have more energy and less pain!

[Manes_Tails]

[QUOTE=pintopiaffe;4421134]
Unite here!

It’s not quite a disability–certainly not in the way of some… but we are not really normal either.

What is your greatest frustration?

-Mine is the unpredictability of it. Fine one day, can barely move the next. Pain I can deal with but the pain on top of the fatigue which make you lose entire days…

What have you found helps?

-surprizingly for me, plain old Aspirin seems to work as well as anything I’ve tried. I’ve tried diet changes, which help some, but never seem to be able to stick with them, even though I stuck wtih Atkins for 18 months.

What else?

-I just wanted to sort of start the discussion. Perhaps we don’t belong in this forum, but ‘normal’ folks sometimes don’t really get the challenge it is to live with this either… ;)[/QUOTE]

Amen, this is how I feel. I have some family members and several friends and/or people that know me and they can’t understand why I can’t work, but can go out and ride a 12oo lbs horse for a while some days are go to a horse show once a month and show a few classes. In the old days I worked and showed several 2 day shows a month.

My family doesnot understandy why it takes me till noon to get dressed and get my muscles working again but can be out by 2 or 3 and do some barn and yard work?

My muscles, my brain, speech, joints just don’t always work when I need them to.

People only see me when I am out at the store or with the horses a few hours a week. They don’t see what I went through to get dressed and on some days find my way to the store in a town that I have lived in for 50 years.

Many Cothers give me a hard time about my spelling, wording, etc on some of my post, but my brain is not working then.

The worst thing about my illness is it is hidden, I live a lone and I do not solcilize, I am either in bed or trying to care for my home and horses. This is the best I can do.

I have my father that does not understand it, even though my mother/his wife has it. He has to let me know all the time how much he has to help me, it just makes it worse, I will never kill myself, but I don’t want to be alive either, I pray to God everynight to come and take me.

I have not been able to get diability either, so I depend on my parents. But I can’t hold a job, I never know what day and what hours I could work, who is going to hire someone like me, no one. Plus I have chemical senetivity, I can’t find a job where the perfume, sprays, fumes, etc make me very very ill.

I hate being this way. People just don’t understand me so I stay alone, and I am tired of tring to explain it. One lady I ride with is always on me about my weight, that I need to go to the gym, I have told her till I am blue in the face, I can’t do that. I have to do strecthing excercises.

If I have my legs cut off and was in a wheel chair I would have nothing but support and help from family and friends.

I am tired of being thought of as dumb and lazy, when on a good day I can out work anyone.

From the stress of my filly being murdered it is all worse and now I auto immune and can’t fight infection.

I don’t know what to do? I know I can’t live like this much longer with no money , no health ins.

I worked and paid into SSI for 40 years and can’t get it, even with 5 doctors writing letters and backing me. :(

[system]

Who here has loose joints/ joint instability??

[QUOTE=Auventera Two;5182101]
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.[/QUOTE]

I here ya, Auventera… I’ve been dealing with really, really loose joints for years and didn’t have a diagnosis until recently. I must say though, that without riding, I have become much more prone to accidents. My physical therapist has told me to get back in the saddle ASAP - as the core strength, etc will help solidify me again…before having my daughter I was much more “stable”… lol.

I have EDS (Ehlers-Danlos Syndrome, for those who aren’t familiar) … it can really make for some challenging situations -connective tissue disorders are tricky.

Anytime there are fibro flares or hormone spikes- many things are effected in our bodies - including our thyroid gland and our connective tissue.

Whenever a woman has a “hormonal rise” from sTREsS…
cycles, perio-M, full M, pregnancy, nursing, etc, etc…
These chemicals makes your connective tissue loosen up. Period (no pun intended! lol)

Of course, for most folks these times are also hard for Fibro, right? so this just exaggerates the symptoms- now it’s not just muscles aches and other bad pains - but you are VERY prone to injuries and dislocations or sublaxations. OUCH>

For horses they fuse these weak, over used and sometimes arthritic joints to MAKE them more stable. For people?? braces and other orthorpaedic devices seem to be the only “solution”.

I wish Dr. Oz would do a segment on Fibro and EDS…I’m supposed to be doing isometric exercises while on my horse… haven’t found an instructor yet. (my daughter is supposed to be doing this too…)

So far we’ve consulted with Rheumatologists, Thyroid specialist, GI docs, Foot specialist and have been told to see an Opthomologist and also to get Echo’s done. My dentist has also been involved, as connective tissue problems are causing my teeth to loosen up considerably - - All practitioners have to be familiar with both Fibro and EDS. (tricky)

We have an appt. at the Connective Tissue Disorder Clinic at Johns Hopkins coming up in December- hopefully we’ll learn more about managing some of our symptoms / issues at that time.

I soooo appreciate the open minded nature of this supportive group !!!

[system]

Auventera Two:

I forgot to mention – the diclofenac is really great for my ankles and feet swelling… there are days when they are so bad I can’t get my boots and braces on without it !!

I just wish it would work on other stuff too! so many pills every day… must look / read up on better ways to manage this stuff!!

[TimelyImpulse]

[QUOTE=Auventera Two;5182101]

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.[/QUOTE]

Holy Cow! I get wiped out hunting. How’d you do, and how do you feel after that ride?

[system]

[QUOTE=Penthilisea;4421688]
I just upgraded to very low dose pain patches and the change in my functionality is amazing. Instead of using oral meds (can’t take NSAIDS), and feeling good for an hour or so, and the issues of tolerance, under and over dosing etc, I am in a steady state of pretty ok. I do have some breakthrough pain if I do somehting dumb, but it is NOT constant. I have done more in the past 7 days than in the previous 3 months since I broke my back.
Now if I could just stay warm, dangit![/QUOTE]

depends on the weather, airborne allergies, amd defo diet for me. But even when I am eating right for me (lots of fruit and veggies and high fat proteins like nuts and cheeses and meats and next to no fast carbs) a drastic change in weather ( generally the rapidly falling barometer that heralds a winter storm here) can activate the arthritis and myositis. And if something blows in on a wind that I am allergic to, I get symptoms then too along with the sneezing and itchyness of the allergy. Mostly though I am ok, and have had a symptom free summer. I am much better when I can keep moving and do physical exercise a couple of hours a day.

Mine seems to have a hereditary component as many members of 3 generations of my family have shown symptoms. Never really stopped any of us though.

I never noticed any change while taking vitamin supplements, but then I eat a lot out of my own garden and other local organic sources, so the food is pretty nutritious. I take vit D and my diet is high in salmon and other deep sea fish for the essential fatty acids

[LaLuna]

http://fibroriders.yuku.com/

I made a blog/forum/chat for us fibro riders. It’s just getting started, but hopefully we can get a lot of people to come over there.

[red_mares]

Crazy Trainer

No not at the barn, at the gym. I’ve been working out, kind of a group personal training thing, with a great guy for almost a year. Not quite the young pup that a lot of them are, he’s motivational but not annoying, and has a great butt :). The program works in 6 week sessions, just prior to the start of this session (started last week) he brought this gal in to meet us. No one was overly impressed, and we heard it as she would be his fill in periodically. Looks like that fill in is one of the two days every week. Ugh.

I skipped last week, cause I felt good, and missed round one. I went last night and this chic is nuts. Part of it is green, but most is overenthusiastic, annoying, and just nuts. On top of that she’s about a size 4. It’s not just me either. Two of the other guys came in, saw her & left. A couple in the class before warned me about her pushing too hard. (Most of the people who do this are 35+ and have some sort of old injury they work around.)

I really don’t want to change what I’m doing; it’s taken me quite awhile to get back where I am. The regular guy I’ve got broken in - I’ve explained the physical issues and the best part is instead of “Push, Push, Push” it’s “Do you really need to do this today?” or “Do you need an alternate?”. He’s even to the point of not selling ice for everything. Last night I get “Your form is good, but I’m concerned your not pushing yourself” No kidding, I wasn’t pushing myself - every thing looks normal, but I’ve felt kind of rough. Besides, if I push myself, I end up doing multiple weeks of PT or have to sit on my butt for weeks. I haven’t gone through the whole run down of issues with Crazy Girl, and I really don’t want to. I’m tired of explaining it. I don’t think she’s going to get it either. Other thing is I just don’t like working out with women, no rational reason, I just find them annoying.

It’s just frustrating. This has been good all year. Now I’m have to wait and see how many others are going to boycott Crazy Girl’s sessions. Knowing the other people in the group, I think this is going to come to a head pretty quick.

[Derby_Lyn_Farms]

I am glad to come on here and read all this. I have been experiencing pain that is progressively getting worse over the past 2-3 years. Can’t really pin point a certain time it started. Its all over, mostly my legs, but more recently my arms and I find it hard to sleep at night b/c of the pain. Also my arms have been falling asleep whenever they are not straight at the elbow.

Funny enough, I first had mono when I was about 16. Tested and diagnosed, had sore throat and sick like you wouldn’t believe for a week. Years go by, then when I am 26 I get sick again, followed by the sore throat. The most terrible sore throat ever. The Dr.s say its mono. Again? Thought you only got it once. Following year I get the sore throat again and sick. Each time I am thought to have mono my eyes also puff up, mostly my eye lids, and I get a dry rash on them. This is the only time my eyes have ever done this. New Dr. says its allergies.

Allergies developed about 2 years ago also. Never had any sniffles my entire life from allergies until then.

Other symptoms besides the joint pain, mono, allergies is also headaches and migraines. Very very tired. Sometimes I just feel like I am going to collapse at work. Its very hard for me to work a full 8 hr day.

My dr.s just tell me to take motrin and send me on my way. Blood was drawn for lupus, rhuematoid arthritis and other things, all come back negative. FINALLY this dr just refered me to a rhuematologist on the 30th.

I have a hard time riding and even lunging the horses. If I do ride I am down for a week. I also ride a dirt bike, which amazingly isn’t as hard on me as a horse. Its not as wide as a horse, but my hands swell up and get sore and stiff from riding the dirt bike. I rode my bike on Sunday and I am still crippled up today.

Please, any help to approach my dr is appreciated. They keep giving me stuff for my allergies and headaches. I keep asking about the joint pain and I think that they are thinking that I just want drugs, so I came out and said that I do not want any pain killers. I want to find out what is wrong! I will keep reading everyones posts b/c they all sound like how I feel.

[Derby_Lyn_Farms]

Thought of some other issues I have: carpal tunnel, short term memory loss. I find I have a hard time placing when things have happened. Something that happened 2 or 3 years ago I think happened 4 or 5 months ago. Also can’t seem to find the right words to talk to people anymore. It just doesn’t come out right. I find I lie a lot lol. If someone asks me where I am at, and I am at work, I say McDonald’s or something silly. Not sure why it comes out that way and not sure if this is a symptom or me just being tired.

[red_mares]

Derby Lyn,
Glad to hear your going to a specialist of some sort. I’ve never had much luck with GP types. I see a pain management guy I found through PT who was fixing my sprained ankle. PTs, nurses, those types are generally pretty familiar with who are good docs and who isn’t.

My memory is crap too, not sure what it’s related to, but I’ve had a hook for my keys right inside the door for years. If I don’t, there’s no telling where they will be, and I just celebrated birthday 29 (again :)). I had really bad short term memory issues when I stationed on a Navy ship during an overhaul (lots of 20+ hour days). The combination of sleep deprivation and stress had me to the point that I would forget the second syllable of the word I was saying. I couldn’t remember anyone’s name. It got so bad I ended up telling my boss, and went to the doc, and after several tests, figured out I was a stressed out head case (my words not his) that needed some sleep. After we went to sea and life settled down, things got much better.

Honestly, I’m still not good at talking to my doc. I’ll have everything figured out in my head that I want to bring up, and invariably, I forget it. My complaints are pretty consistent though, so it’s not a huge deal for me. You might try making yourself a list. Don’t let them stick you with more Vitamin M(otrin)! Lots of other stuff out there. Good luck.

[Auventera_Two]

@TimelyImpulse;5204122

Holy Cow! I get wiped out hunting. How’d you do, and how do you feel after that ride?

Well I was exhausted and very sore but I made it through okay. I took diclofenac before, during and after. Drank tons of gatorade which helped. The temperature was very cool which was a huge plus. I was too wiped to go to the after-ride potluck. I had to roll around on my trailer floor stretching the aching parts out, but it wasn’t as terrible as I had anticipated!

[Wayside]

Good for you A2, glad you made it through okay!

Myself, I was having great symptom releif with the Savella, but it slowly raised my blood pressure to a point my GP was uncomfortable with, so she pulled me off of it

Trying Gabapentin now, don’t feel as good on it, but it definitely seems to be helping with the tenderness. Between medications my husband hugged me and I thought I would die, it hurt so bad.

My older mare is still laid up with a suspensory injury. No more swelling, and she seems very comfortable, but I’m not about to push it. This morning I went out and hand-grazed her, so we stood around being gimpy together :lol:

I have an appointment with a dietician today, and the pain clinic tomorrow, and then the kiddo is off school for Thanksgiving, so my horses are going to be a little neglected this week. Sadly, I find that most of the time I really can only manage to do one activity in a day before I’m completely wiped.

[LaLuna]

I just wanted to let you guys know I just got back from the Mayo Clinic. I got diagnosed with Autonomic Dysfunction, major Iron Deficiency and Chronic Pain, due to my age they do not want it to be called “fibromyalgia” any more. This is after I’ve been to over 6 specialists and did countless tests for two years. I’m on a new work out program, new supplements and diet.

I’m so happy I went to Mayo, the doctors were so amazing. It was very organized and I didn’t even feel like I was in a hospital.

If any of you are considering it, I highly suggest going.

[jonahmerchant12]

Healthy diet and its continuation can fix you completely, trust me.

[Wayside]

[QUOTE=jonahmerchant12;5253554]
Healthy diet and its continuation can fix you completely, trust me.[/QUOTE]

Comments like this make me want to scream, I’m so sick of them.

Yes, a healthy diet in very important, I take what I eat very seriously, but by itself, no, it is not going to “fix” me.

Yes, I keep a food journal, I examine my nutrient intake, I eat lots of vegetables, over 30 grams of fiber every day, and on average I’m meeting or exceeding the RDA/AI of every nutrient that FitDay tracks, without supplements. My % of calories from fat is under 30%, and my % of calories from protein is around 20%.

I am absolutely sick to death of people who tell me if I just ate healthy, and got off my lazy ass and worked hard, I’d be all better. And you know, I wished it worked like that, really I do. I’d love to go back to having the energy to work 12 hour shifts and keep multiple horses show ready, but trying to get that back just ain’t happening. I’d totally be willing to work my ass off for that, but all I do is drive myself into the ground and make myself sicker.

So please, if you’d like to share the diet changes that worked miracles for you, by all means go ahead, but please don’t belittle me by assuming that this is somehow my fault for not eating right.

[Amwrider]

@Wayside;5253594

Comments like this make me want to scream, I’m so sick of them.

Yes, a healthy diet in very important, I take what I eat very seriously, but by itself, no, it is not going to “fix” me.

Yes, I keep a food journal, I examine my nutrient intake, I eat lots of vegetables, over 30 grams of fiber every day, and on average I’m meeting or exceeding the RDA/AI of every nutrient that FitDay tracks, without supplements. My % of calories from fat is under 30%, and my % of calories from protein is around 20%.

I am absolutely sick to death of people who tell me if I just ate healthy, and got off my lazy ass and worked hard, I’d be all better. And you know, I wished it worked like that, really I do. I’d love to go back to having the energy to work 12 hour shifts and keep multiple horses show ready, but trying to get that back just ain’t happening. I’d totally be willing to work my ass off for that, but all I do is drive myself into the ground and make myself sicker.

So please, if you’d like to share the diet changes that worked miracles for you, by all means go ahead, but please don’t belittle me by assuming that this is somehow my fault for not eating right.

ditto

[Manes_Tails]

[QUOTE=Derby Lyn Farms;5229993]
I am glad to come on here and read all this. I have been experiencing pain that is progressively getting worse over the past 2-3 years. Can’t really pin point a certain time it started. Its all over, mostly my legs, but more recently my arms and I find it hard to sleep at night b/c of the pain. Also my arms have been falling asleep whenever they are not straight at the elbow.

Funny enough, I first had mono when I was about 16. Tested and diagnosed, had sore throat and sick like you wouldn’t believe for a week. Years go by, then when I am 26 I get sick again, followed by the sore throat. The most terrible sore throat ever. The Dr.s say its mono. Again? Thought you only got it once. Following year I get the sore throat again and sick. Each time I am thought to have mono my eyes also puff up, mostly my eye lids, and I get a dry rash on them. This is the only time my eyes have ever done this. New Dr. says its allergies.

Allergies developed about 2 years ago also. Never had any sniffles my entire life from allergies until then.

Other symptoms besides the joint pain, mono, allergies is also headaches and migraines. Very very tired. Sometimes I just feel like I am going to collapse at work. Its very hard for me to work a full 8 hr day.

My dr.s just tell me to take motrin and send me on my way. Blood was drawn for lupus, rhuematoid arthritis and other things, all come back negative. FINALLY this dr just refered me to a rhuematologist on the 30th.

I have a hard time riding and even lunging the horses. If I do ride I am down for a week. I also ride a dirt bike, which amazingly isn’t as hard on me as a horse. Its not as wide as a horse, but my hands swell up and get sore and stiff from riding the dirt bike. I rode my bike on Sunday and I am still crippled up today.

Please, any help to approach my dr is appreciated. They keep giving me stuff for my allergies and headaches. I keep asking about the joint pain and I think that they are thinking that I just want drugs, so I came out and said that I do not want any pain killers. I want to find out what is wrong! I will keep reading everyones posts b/c they all sound like how I feel.[/QUOTE]

It will be very hard, but just try cutting out wheat and gluten for a few weeks and cut as far back as you can on sugar, and no artificial sugar. I have autoimmune, fibro, and cutting out these things have helped so much.

[Derby_Lyn_Farms]

Well, I went to the doctor today and he diagnosed it as fibro. He gave me some drugs to try, don’t know the name of them off the top of my head. 3 different kinds, I know one is an antidepressent to help me sleep. I don’t have any problem sleeping, it’s just that the pain wakes me up at night. Hopefully something helps and I wish I was as energetic as I once was. I am not totally against the diet change and I will have to give it a try.

The dr. pushed on the sensitive pressure points and I have been crippled all day from head to toe. I worry about work b/c I am so clumsy from the stiffness and I have to work with a knife all day (floral designer). I have already cut myself from the knife, and having stiff and sore hands makes it difficult to use the knife correctly.

I am glad I found this thread, I will always keep reading it now. I was so happy to go to a dr. today that FINALLY listened to my complains of pain.

[Penthilisea]

Just a note- I’m not sure if it was on this forum or another Fibro community, but MANY folks appear to acquire fibro after having had a particularly bad case of mono, or a recurrence of mono.

I’m not implying causality however, I just think that the immune disordered element of fibro can send up early red flags before the condition is full blown or diagnosed. Folks who seem to follow this path appear to have a genetic component to the fibro, as evinced by relatives with auto immune disorders.

Likewise, as we DID discuss on this thread, the other common “trigger” is head and neck injury. In this case I think there may be some element of causality- the fibro patients who seem to be provoked by this type of accident do not usually have family members with similar health conditions.

BTW jonahmerchant12, where and when did you get your medical degree? Because your advise is demeaning and potentially harmful. People who have fibro should NOT simply utlize dietary change to improve their quality of life.

They need to see at least a primary care doc regularly to make sure they are not experiencing MS or other conditions that have similar early symptomology.

Certainly nearly every person with a health poblem could see improvements through proper nutritional practices. However, it is irresponsible and harmful to suggest that dietary changes ALONE will solve or cure fibro, and INSULTING to imply that the disorder is caused by poor dietary choices.
[/B]