Just diagnosed with Fibromyalgia. Could use some support.

[AMWookey]

When were you diagnosed? At 14 after suffering for three years? I know fibro is real, just like I know people suffering it real. I went through 7 years of my life with people saying “You are faking it, or its all in your head” When I was 16 I was told that I had a body of a 60 year old. It was terrible, they gave me tons of medication and I suffered from depression. I admitted to still having the pain and having bad days. So maybe in 10 years my body will be worse. Heck, I made the decision to not have kids, and to not stay in my current trade to hopefully combat that. I’m going to see a dietician this week to help me monitor my eating habits again so that I can continue to keep this at bay.

Everyone on this planet can be made healthier by not eating processed foods and continuing to exercise at their own pace. Whether or not we want to admit it, things like alcohol and processed foods and sometimes the chemicals that are in our meats aren’t great for our bodies. So when I say go clean, I get that it comes off like I’m talking to alcoholics, poor choice of words. I meant more like ‘clean eating’.

I will never understand the lack of openess to hearing about success stories, but granted, if I came across as an A$$ that is what I came across as, and I can’t deny how you read my words. I am a success story and I’m so happy that I am. Of course I would want others to try (to their own limitations) what I have managed to do. I’m the kind of person that hates to see others suffer. I re-read my words and I don’t see negativity implied, or that people are fat and lazy. I guess it goes to show that words on a forum like this can so easily be taken the wrong way. It’s been so long since I seriously suffered from this that I forgot the nature instinct to protect and defend yourself. I’m not saying you all are defensive, but I sure was, and I was quick to assume that someone was being more negative then they meant to me (because so often they were dismissive, hurtful, and didn’t see this as a real thing).

I’ve also never talked about my success like this - it was usually in conferences that my old doctor set up, or with friends that were suffering. So face to face I think comes across as less “You are fat and lazy” and more “I absolutely know where you are coming from, this is what worked for me, maybe you can adapt it and have some hope”

Anyway - OP, I’m sorry I’ve hijacked your thread. I actually registered or reregistered just to offer my advice. Next time, I will keep my mouth shut, or offer it privately. I really truly did not mean to offer any offence, and hope everyone can find their own way to combat this, that allows them to continue to be around their horses.

[AMWookey]

Oh and red mares - I totally have a glass of wine to help me sleep after a long and stressful day. I have one joint(not the smoking kind, the anatomy kind), that develops pain and spasms when I’m stressed. So a glass of wine (or two) helps with the insomnia, which is one aspect of the fibro that has never really gone away, that and getting tired quicker then my husband.

[grayarabpony]

[QUOTE=AMWookey;7493443]
Wow - so not what I was implying. I was merely giving a success story for Fibro. I wasn’t a fat lazy drinker that didn’t work out either - I was an active 14 year old that had my life ripped out from under me. I know how that felt, and no one ever gave me a success story of someone that full on beat it. So I was merely giving my suggestion of how to handle it. Which is what the OP asked for.

Trust me, there are times where I rest. There are times where I can’t work out between work and life too - those are the times I find myself needing more sleep. But I never accepted my ‘new normal’ until I made it what it is today.

Again - I’m just offering a different view. Obviously its not going to work for everyone, just like chemo doesn’t work for everyone, or anti-depressants don’t work for everyone. Your views and ways of approaching the issue is as valid as mine.[/QUOTE]

I don’t want to make it sound like you don’t want to post here, but I did take offense at some of what you said in your earlier posts, or rather the way you said it. It happens.

Like a lot of fibro sufferers, my symptoms are highly correlated with cold fronts and rain. I started having symptoms 3 years ago. When the weather is warm I can go for weeks and be fine – I am very active then. Cold front comes through and I am exhausted and in pain. Fatigue is usually more of a factor for me than pain, although they go hand in hand. I feel I have a mild case. Tramadol has been a godsend, although I’m careful with it because I don’t want to get dependent on it.

I have learned to pace myself during a flare, otherwise fibro will push me onto my ass, hard. Like everyone else I have tasks I need to do every day and I’d prefer that doing those tasks not be agonizing.

I am very happy for you that you have so successfully managed your health.

[LauraKY]

I’m curious for those of you diagnosed with fibro. Do you then stop looking for a cause? After all fibromyalgia is just a constellation of symptoms, not a disease.

I’m asking as one diagnosed with fibromyalgia that turned out to be Lyme Disease.

[Preposterous_Ponies]

I didn’t find AMWookey’s post offensive at all - she was just sharing what worked for her! Quite frankly, as fibro suffers we should all be happy for her. It’s wonderful that she was able to find a way to manage fibro that works for her.

I did stop looking for a cause after being diagnosed - I had already been tested for lyme/MS/ect. I really think fibro is a disease - personally I believe it’s a defect of the nervous system, which is why the symptoms are so varied.

[grayarabpony]

[QUOTE=LauraKY;7495077]
I’m curious for those of you diagnosed with fibro. Do you then stop looking for a cause? After all fibromyalgia is just a constellation of symptoms, not a disease.

I’m asking as one diagnosed with fibromyalgia that turned out to be Lyme Disease.[/QUOTE]

I don’t have Lyme disease. Lyme doesn’t cause everything.

[grayarabpony]

I don’t have Lyme either.

Lyme is still very rare in my area; usually anyone who has contracted it got it when they were out of town. Rocky Mountain Spotted Fever and other tick borne illnesses are common.

[LauraKY]

I’m not trying to say that all fibro is Lyme, but that it’s not a disease.

[grayarabpony]

Fibro is a disease or disorder, even if it’s not well understood yet.

[LauraKY]

[QUOTE=grayarabpony;7495311]
Fibro is a disease or disorder, even if it’s not well understood yet.[/QUOTE]

Technically it’s a disorder, not a disease, not that it makes a difference if you are suffering from its symptoms. However, I am very worried it’s being used as a catchall for anyone suffering from pain…presto you have fibro and the doctors will stop looking for a cause…even if the symptoms don’t completely fit.

I’m particularly sensitive because that’s what happened with my family.

[grayarabpony]

[QUOTE=LauraKY;7495340]
Technically it’s a disorder, not a disease, not that it makes a difference if you are suffering from its symptoms. However, I am very worried it’s being used as a catchall for anyone suffering from pain…presto you have fibro and the doctors will stop looking for a cause…even if the symptoms don’t completely fit.

I’m particularly sensitive because that’s what happened with my family.[/QUOTE]

This whole area (pain management, fibromyalgia) is very frustrating. Nobody knows the cause, although it appears neurotransmitter levels may have something to do with it. Or is it an autoimmune disorder? I believe Cymbalta only helps perhaps a third of sufferers? There’s not much in the way of treatment.

At least treatment for Lyme is the same as for RMSF. The current protocol is that if you come down with “summer flu”, you get doxy, I believe for 2 weeks. Can’t count on finding a tick, because they may bite and drop away before found, can’t count on a rash, and can’t count on titers either because they are often not raised when the patient gets sick.

I thought this link was interesting: http://www.northcarolinahealthnews.org/2012/02/03/lyme-disease-not-likely-in-nc-but-caution-should-prevail/

How is your family doing now?

[Bedazzle]

AMWookey, what worked for you was exactly what worked for me. It’s amazing to me how many people actually find relief after making their health a number one priority in their life. Don’t get me wrong, sometimes I just feel awful and I’ll take a day off and just be comfy, but the next day I’m back at it because I know that overall, exercise and healthy eating is what makes me feel good.

I’ve told my story quite a few times, but the short story is 11 year ago I was in a car accident and subsequently diagnosed with Chiari Malformation. I had the surgery and was promised that all my horrible pains would disappear. It was not to be, and over the course of many years I became depressed, overweight and miserable. Doctors tried many medications and none helped, some even made me sleep 16-20 hours a day and be unable to function. About 4 years ago I started trying to lose a little weight here and there, and cleaned up my diet a bit. I lost some weight, and lost some symptoms - but then I got overwhelmed with life and the weight came back along with the Fibro pains.

Finally a little over a year ago, I put 100% into exercise and diet. I’ve lost nearly 40 pounds, I feel awesome, I’m not in any daily pain that is related to fibro. Occasionally I will overdo it and I need to rest for a day because I feel flu-like, but that’s the only symptom left.

I don’t know if it works for everyone, I just know in my case it did work. Same for AMWookey, and quite a few other Fibro people I met on Myfitnesspal.

[LauraKY]

[QUOTE=grayarabpony;7495422]

At least treatment for Lyme is the same as for RMSF.

How is your family doing now?[/QUOTE]

My mother died of heart block, after 4 years of treatment the rest of us are doing fairly well. We did go undiagnosed for at least 10 years and according to the neuro ophthalmologist, after looking at my eye records, there’s a good possibility I went undiagnosed for 20 years or more.

Last count 50% of my neighbors back in MD had been diagnosed with Lyme…at least one mistakenly diagnosed with MS first.

We all still have babesia, but are symptom free.

[grayarabpony]

[QUOTE=Bedazzle;7495558]
AMWookey, what worked for you was exactly what worked for me. It’s amazing to me how many people actually find relief after making their health a number one priority in their life. Don’t get me wrong, sometimes I just feel awful and I’ll take a day off and just be comfy, but the next day I’m back at it because I know that overall, exercise and healthy eating is what makes me feel good.

I’ve told my story quite a few times, but the short story is 11 year ago I was in a car accident and subsequently diagnosed with Chiari Malformation. I had the surgery and was promised that all my horrible pains would disappear. It was not to be, and over the course of many years I became depressed, overweight and miserable. Doctors tried many medications and none helped, some even made me sleep 16-20 hours a day and be unable to function. About 4 years ago I started trying to lose a little weight here and there, and cleaned up my diet a bit. I lost some weight, and lost some symptoms - but then I got overwhelmed with life and the weight came back along with the Fibro pains.

Finally a little over a year ago, I put 100% into exercise and diet. I’ve lost nearly 40 pounds, I feel awesome, I’m not in any daily pain that is related to fibro. Occasionally I will overdo it and I need to rest for a day because I feel flu-like, but that’s the only symptom left.

I don’t know if it works for everyone, I just know in my case it did work. Same for AMWookey, and quite a few other Fibro people I met on Myfitnesspal.[/QUOTE]

I am thrilled for you that you are doing so well.

Unfortunately, there are also people who are an optimal weight, eat well and exercise who get fibromyalgia.

[grayarabpony]

Laura I am glad your family is doing better now and am sorry you had to through that.

[cuatx55]

I have found eating healthy and exercise to be VERY important as well.

There is a lot we don’t know-- why some people get fibro and some do not.

My opinion is its a combination of immune system/nervous system wiring/muscle lacking oxygen/too much stimuli or stress response, lack of fitness, metal/spiritual/physical trauma, and too much sugar/flour.

I was tested for lyme and everything else, its just fibro. That is a syndrome and may be the primary cause of the muscle and nerve issues, or it may be secondary to some other cause. We really DON’T know.

[infiniti]

Hi, so at one time it was thought I had fibro as my chronic pain is widespread but since my symptoms were brought on by an accident and were worse on one side it was ruled out. But all this to say apparently my pain is similar. I am on three meds, but the missing key was Cymbalta. Its expensive but it changed my life and was actually key to me returning to riding. So I hope you have the same success I did with it.

Once you can get some meds working for you, exercise especially cardio can sometimes give you days of relief. Stay active and try and find some low-impact options that work for you (cycling, swimming, etc).

[Bedazzle]

[QUOTE=grayarabpony;7496264]
I am thrilled for you that you are doing so well.

Unfortunately, there are also people who are an optimal weight, eat well and exercise who get fibromyalgia.[/QUOTE]

I realize that, since I was an active, very fit, healthy person when I developed it. I was 18 years old, fresh into college, on the equestrian team, all of 118 pounds and eating a very healthy vegetarian diet. I developed fibromyalgia at that point after an accident.

It was because of fibro that I stopped being active, stopped eating right and became depressed. It was because of the pain of fibro that made me gain weight and not care about myself anymore. Once I became active again, the symptoms went away.

I think if I were to have stayed active the entire time and continued eating right, my symptoms may have never gotten to the point they did.

[grayarabpony]

Did you try Tramadol or any other medications?

I have tried to push myself when I wasn’t feeling well and for me it’s just not a smart move. (One advantage I have is that when I am in pain I usually don’t eat that much, so at least there wasn’t weight gain on top of everything else.) I can’t be that inactive anyway, unless DH is at home; I have two horses that stay in a paddock at night and that has to be cleaned daily. (In fact for several months they were up there full time due to injuries, and so it had to be cleaned twice a day.) It’s just that some days I felt like I was crawling face down in the mud. Really crappy.

[Bedazzle]

If I really think back I think I can list most of what they tried for me…

-Chiropractor

• Physical Therapy
• Ultrasound Therapy
• Medical Massage
• Skelaxin
• Zoloft (for nerve pain, not depression. Made me sleep 20 hrs a day)
• Arthritis tests, blood work out the wazoo
• Finally settled on taking 1600mg of Advil up to 4 times a day when needed

I think I was on some other meds during the time of the Skelaxin, but they were ineffective. Lyrica hadn’t come out yet, but I would have tried it if it was available. I also had a prescription for some serious muscle relaxers and pain killers but I never used them because they either made me a zombie or made me throw up.

The one thing that I discovered through all of this though was that cold was one thing that made me feel horrible. Excessive heat was pretty bad too, but cold was the worst. It made all my joints hurt even more and I was likely to get out of bed during my worst times.

Don’t get me wrong, I had some horrible horrible moments, where I contemplated what the purpose of my miserable life was anymore. The pain was unbearable and I was crying uncontrollably - but then you get on with it - what other choice did I have?