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TRYJESUS2DAY's Photo TRYJESUS2DAY SparkPoints: (12,601)
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9/2/13 7:19 P

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April 5,2006, immediately after being in a car accident which left me with a broken back and 5 slipped and herniated discs, and fibromyalgia.

TryJesus2Day


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PEAJAY50's Photo PEAJAY50 Posts: 1,615
8/17/13 1:13 P

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I think mine began after being diagnosed with hypothyroidism/adrenal fatigue in 2006, then perimenopause in 2007. As I struggled to recover from 2 years of being laid up, I noticed any exerted activity caused acute pain that lasted days and days. Something as simple as mopping the floor or vacuuming, my arm joints and muscles would ache for days. Or after doing a workout I would be so exhausted that it became apparent I would have to do workouts a couple hours before bedtime. But the soreness from that activity would carry over into the next day, and the day after that, and the day after that…finally 4-5 years later the pain has escalated that I am indiscriminately cutting back on workouts so I can do housework, mow the lawn, care for my gardens, etc. Still the pain increased even more that I was about to just quit everything.

A pivotal moment came when I was notified that my “old” doctor was retiring, so I had to find a “new” one. My first choice turned out to be a winner – yes, I feel extremely blessed right now! *S* His assertive diagnostics were, at first, overwhelming. But I endured the blood work and ultrasound where he crossed off possible diseases and ailments until finally Fibromyalgia stood tall and proud. His first choice in medication worked wonders. Pain free, I could climb stairs again without fear of falling, and clean my house without suffering achy feet, hands and arms for the next 3-4 days. The med also relieved my anxiety developed during the perimenopause period, so I was able to drive to my follow-up appointment without my husband.


PeaJay50 aka PJ, Pam or Pamela Jenewein

"Above all, be the heroine of your life, not the victim." - Nora Ephron

“Worry never robs tomorrow of its sorrow, but only saps today of its strength.”
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TALLJOEY56's Photo TALLJOEY56 SparkPoints: (1,990)
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8/16/13 3:00 P

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I can pin point two different events that began me on this road. My first husband was diagnosed with AIDS in 1985. I was so stressed out trying to help him, while working full time. Slowly he got sicker and sicker, and I ended up more distressed. I ended up with migraines, hives, and stomach problems. while watching him slowly die. I went from being an energetic happy woman to someone who could barely get up in the morning.

But the real event was after he passed. I was house sitting for the hospice nurse, who had become a friend of mine. I sat in a recliner, and found I could not stand up again. Strong pain ran up both legs, like my femurs were on fire. That was in 1991.

Since then I have had pain in my legs all these years. I walk every day, and used to bike ride until I fell off our camper steps and blew out a disk in my back 3 years ago. I began yoga in January and that helps too. I work full time, and it does get exhausting, but I enjoy my job.

I remarried in 1993 and have a supportive husband, but after all these years he still does not understand what I go through every day. My personality tends to be upbeat and happy, with all that has happened, I know that my time is now and to enjoy what I can. So I smell the roses and watch the geese fly over head and have a lap cat who adores me.

But if a cure was found, I would be overjoyed!



There is life in the old gal yet.


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BITTERCAT's Photo BITTERCAT Posts: 1,543
7/15/13 4:29 P

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From about 1996-2007, I was in a relationship with someone who not only was an alcoholic, but also had at least one pretty severe, undiagnosed mental illness. He was never a great partner, but he was a good man in his heart. The first three years of our relationship were pretty much fine. He was not drinking, and we had a lot of fun.

I returned home sometime after the third year from a trip, and I found out he had started drinking again. I was furious and wanted to end things right then, but as anyone who has ever been in a relationship with an addict can tell you, it's really just not that simple. For a while he maintained, and while my trust had been destroyed, nothing too bad happened--just a lot of really irritating, little things that come along with that illness. I hung on.

As the years dragged on, his mental illness and his drinking got worse. He was never physically abusive, but he was verbally and emotionally abusive. He refused to work, and he wanted to have pets, but he would participate in any of THEIR care, either, so I was stuck doing EVERYTHING. Pretty much, I just got more and more tired and more and more depressed as time went on.

In the last couple of years, his drinking got REALLY bad, and so did his mental illness. We could not get him the right kind of help, and of course he would not cooperate with doctors, so he could get a diagnosis for the mental illness and get on medication that might have helped him (not be so crazy.) By then, I was in survival mode: Eat. Sleep. Care for our animals. Go to work. Pay bills. Not kill myself. Our home was filthy, because I just couldn't do it all, and we even had animal control called on us, because of an incident with my partner calling 911 to get a ride to the hospital. It was, by all accounts, INSANE.

Naturally, all of this led to me having to buy a new home before I could sell my old one (condo board was threatening to sue me if I did not get rid of my cats), but I couldn't sell my old one, because of its condition. My (now ex) had TRASHED the place. Because I was the only income, I didn't have the money to fix anything up. I lost it in foreclosure eventually, and I had to file for bankruptcy just to make sure I didn't lose my NEW home. (I'm still in that home, and life is totally different now.)

I finally broke up with him for good at the end of 2006. In early 2007, he killed himself. Also, my job was threatened, and it was a job I hated to begin with!

So I guess you can see where my body was suffering tremendously under the stress! I also had no time/energy/the wrong attitude to do anything that would make me happy during that bad time. By the time I was done just surviving, I only wanted to sleep and stay away from my ex!

I started having symptoms, now that I think of it, in 2006. For the first couple of years out of that relationship, I was OK, and things were getting back to normal. I was grieving my ex's death, of course, but physically, things were fairly normal. I had just noticed that I was getting tired really easily. It was not normal tired, because most of the time (even now,) I sleep really deeply, and I usually sleep all the way through the night. Usually, but not always.

The pain didn't really start until about 2011. I can't really even pinpoint when it started. I just know that, in the last few years, I've been having more and more pain, and the fatigue is still here, but the pain is more severe and more frequent. The pain MAKES me tired. I didn't start having real issues with brain fog until just this year. It's very disturbing. As of this writing, I have been in a flare for about two weeks straight, with one good day on Saturday (no pain, no fatigue that day.)

I have been to two rheumatologists, and neither has diagnosed me. One said that my symptoms act like fibro, but my bloodwork is clean. The other decided I don't have fibro, because I didn't have all of the pressure points. (HUGE EYE ROLL) I have a friend who is not that old--he's in his early 50s--who is positively CRIPPLED by fibro. He had been to numerous doctors and ended up getting diagnosed only after he went to NIH (don't know if it was referral or a study or what.) He occasionally speaks on the subject and has become somewhat of a lay expert on the subject. He looked at me one day when we were talking with some other folks and said something to the effect of, "Stop qualifying what you are saying when you talk about it: What you have IS fibro." I've done my own research, and I'm equally sure that is what I have. Doctors are clueless.

It's very frustrating for me, because I have things I'd like to do, and I'm not that old (early 40s.) I can no longer make plans or commit to anything, because I never know when I'm going to have to back out on something. I rarely miss a day at work, but I DO have trouble sometimes, either because of the brain fog or because of my emotional state. My family is taking care of our dad, and I can't do as much as other family members, due to the pain and fatique, and that makes me feel awful. (I have found ways to help out that aren't impacted, though.) I have a hard time cleaning my house. My BF does the bulk of the housework. I am working on becoming a stand up comic, but I'm only able to go to my writers' group meetings (informal coaching/feedback/practice/rehearsal session) about once a month. At this rate, I'll NEVER get to perform! ...I guess I don't need to tell YOU GUYS all the ways in which it's frustrating. ;)

I don't necessarily WANT to be on medication, but I DO want to get an "official diagnosis", so that I can explore my options. I also just want to be able to live life.

Nice to be here.
Jen M.

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BITTERCAT's Photo BITTERCAT Posts: 1,543
7/8/13 5:02 P

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I will return later to tell my story. I'm doing this to subscribe to this thread.

The short version is I think it started in 2009, two years after the very bad ending of a very bad relationship. I'm not officially diagnosed, but I have a LOT of the symptoms. I think mine might have been triggered by adrenal fatigue from that relationship.

More later.

Jen M.

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BEWITCHEDFENCER's Photo BEWITCHEDFENCER SparkPoints: (1,170)
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7/5/13 5:27 A

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MEG-NATALIA07, thank you, and I agree he is a keeper! From day one he has been exceptionally supportive.

I'm glad someone else has noticed these benefits. I've been doing it for just over a year now and it took me about the same time to get the hang of it. I've also noticed that my skin is a lot clearer, which is an added benefit. I tried cutting out refined sugars and that was incredibly hard for me; I did it for about a month and I felt amazing. I really want to try to do that again, especially since it also gives the added bonus of weight loss.

Also, I've heard about some research involving auto-immune diseases and the symbiotic bacteria in a person's body (the kind used for digestion, etc). I also just read an article on NPR today that talked about how a person's gut bacteria stays with them for almost their entire lives (Article found here: http://www.npr.org/blogs/health/2013/07/04
/198372950/gut-bacteria-we-pick-up-as-
kids-stick-with-us-for-decades). The article also says that it looks like gut bacteria in families is very similar and could be inherited.

Obviously with fibro there is usually some precipitating event, but I was wondering if anyone else has heard of any similar research? Also, does fibro tend to run in your families as well? Has anyone considered taking probiotics? I was taking them but I'm currently travelling and not taking them and I am really noticing a significant difference in how I feel without them (way more brain fog mainly). Has anyone else noticed these benefits in relieving their symptoms?

I apologize if this is a little off topic, please feel free to continue discussing when your symptoms started instead of responding to my questions if you so desire. I'd be much obliged to hear more about that as well. :)

MEG-NATALIA07's Photo MEG-NATALIA07 Posts: 679
7/4/13 1:32 P

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BEWITCHEDFENCER - thank you for sharing part of your journey. It's amazing to me seeing others live and grow with their chronic illness. How sweet of your man to put your health as a priority, he sounds like a keeper =).

I 100% agree with your findings that going completely gluten free is huge! It has took 4-5 months for me to get the hang of it, and by then I noticed less brain fog, and all over pain and tenderness. My skin no longer hurt to be touched! I believe it was key to stop the continual inflammation cycle. And I went even further to cutting out refined sugars, and staying with fruit and unrefined stuff.

GRACE. BEAUTY. LAUGHTER. REST. COMPASSION. GOOD FOOD.


I love to cook and bake. I have compiled hundreds of recipes on Pinterest: Crowd pleasers: Traditional & Lightened versions of timeless favorites, as well as: gluten free, vegan, Paleo & Grain-Free... and a ton of Scones and desserts.
pinterest.com/willdance4joy/


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BEWITCHEDFENCER's Photo BEWITCHEDFENCER SparkPoints: (1,170)
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7/4/13 7:44 A

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I actually do not recall a time when I was not in pain. I was diagnosed at the age of nine at All Children's Hospital in St. Petersburg, FL. I'm now 21 and it has been a source of constant frustration. Throughout my entire youth and to this day I have had to deal with all of the pain, fatigue, etc. while people and friends looked on in confusion trying to figure out why I looked so healthy and was just acting like a 'drama queen'.

My mother has been a source of inspiration for me because she has fibromyalgia, lupus, and MS to just name a few. I think that it is possible that her stroke when I was five might have been the emotional trauma/trigger, but it could have been other events that occurred as I was growing up such as when I broke both of my feet. Because of the severity of my mother's health problems, my problems were always pushed to the back burner.

I've only recently (since starting college) started to really research and take care of myself. My problems didn't seem that bad when I compared myself to my mother. My boyfriend has also really put an emphasis on my health which is so important to me.

Sometimes, because I've been dealing with the pain so long and because of the usual reactions of 'you look healthy', I really start to believe it's all in my head. It's hard to imagine not being in pain and fatigued all of the time; I just don't remember that ever existing (although I have good days when I get close to imagining).

I'm sorry for such a long rant, I haven't really talked to anyone in my family or my friends about this because it is so hard for them to understand or I'm worried about them feeling guilty when that's the last thing I want. I was wondering if there are any other people out there who were diagnosed as children (I know there are so few of us) but it would be great to meet someone out there who has had a similar experience trying to grow up with this syndrome.

I also wanted to pass this 'tip' along that has helped me. I discovered through research and practice that eliminating gluten from my diet (all gluten, not just some of it) significantly helped in making me feel better! I am 100% serious. In the 12 years of struggling with fibro stopping all gluten intake (no fried foods, no breads made of wheat flour, wheat-based pastas, certain alchohols, etc.) has had the most positive effect out of anything I tried. A doctor recommended I try it and also told me that a large number of fibro patients are gluten intolerant and never even know it. I used to get abdominal pains, especially on my left side, or a feeling of a stone in my stomach and I don't get that at all anymore. It also helped with my weight loss (added bonus!). I just thought I would pass that along although it is kind of off-topic; I just hope it helps someone else out there.

I also wanted to say good luck to all of you out there. I know that we are all doing the right thing trying to make ourselves healthier every day.

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6/13/13 9:02 A

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Hi Kathy

I loved your follow on from Ralph Waldo Emerson' quote.

I am a recovering perfectionist and practicing 'good-enoughist' and like you have also learnt that we don't have to be like Tigger on speed to enjoy our lives to the full.
Slowly and steady wins the race - and often allows my poor beleaguered body space to recover a little.
With very best wishes
Frankie

MYADEE's Photo MYADEE Posts: 7
6/11/13 12:51 P

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I slept with my head elevated with pillows last night. OMG! I woke up this morning feeling rested and my arms aren't tingling, numb or hurting! Yet... But still - the best morning I've had in a while. Thank you, fellow fibro fighters, for posting your stories and advice. I never would have figured out that trick on my own.

Hope everyone has a good day! emoticon

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6/11/13 4:35 A

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My symptoms started in 1989 with ibs. I've have spent my entire life fatigued. Next,was rls. Followed by pain a year or so later. Its a full blown mess of everything combined now. I try to stay positive, but it is impossible sometimes. emoticon

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MYADEE's Photo MYADEE Posts: 7
6/10/13 1:45 P

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I have not been officially diagnosed, but looking over the symptoms posts, and some of my own online research, I'm pretty sure that's what's going on with me.

I started having really bad tingling, numbness, and pain in my arms and hands during the last semester of my Master's program, this past Spring 2013. I was stressing BIG TIME about my thesis. I also started to delve deeper into some past traumas in my personal therapy around December of last year.

There are a lot of symptoms that could be attributed to my other diagnoses, like brain fog, lack of concentration, fatigue, etc. I have mental health issues, including PTSD and ADHD, but have been able to keep those symptoms in check. I also am diabetic type II, but again, have been able to keep my blood sugar's down to non-diabetic levels for over five years.

While I'm not eager to be officially diagnosed with yet another disease/disorder, at least I know that exercise, getting enough sleep and eating well help with ALL my symptoms, regardless of where they come from. Except this pain/numbness/tingling. *sigh* But, I will start Physical Therapy soon and hopefully can afford to get back to my acupuncturist.

I'll keep watching for tips here. Thank you for sharing so I can start to understand what's going on!

Best,
Mya


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FITANDFUN7's Photo FITANDFUN7 SparkPoints: (13,004)
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4/2/13 1:34 P

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I had been alright then after working on cruise ships as a therapist I had to recover. I thought I was ok but I never really fully recovered. I had energy before that. But the symptoms of chronic fatigue came about 2 years ago and fibromyalgia about 5 months.

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SUNCRAVER's Photo SUNCRAVER Posts: 119
3/23/13 12:28 P

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A car accident in 2010 but now they believe I have had it much longer due to PTSD that was caused by an abusive marriage.

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GLENTWISTLE's Photo GLENTWISTLE SparkPoints: (3,520)
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3/20/13 8:17 P

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Most of my life I have been healthy and if I got sick it was major like Cancer, gallstone surgery, carpal tunnel and thyroid disorder. I came through all of those but when Hepatitis C needed a years chemo treatment that is what did me in. I beat the Hepatitis but the treatment led to fibro which is worse than the treatment was.

I know anyone reading this is in some way dealing with the effects of fibro and you have my empathy.

Gail

Edited by: GLENTWISTLE at: 4/2/2013 (13:44)
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ABERLAINE's Photo ABERLAINE Posts: 6,304
11/26/12 9:59 A

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I think I've had symptoms most of my life: migraines, heavy periods, depression. But my fibromyalgia became full blown after my hysterectomy in 1995.

Then when I lost my husband to lung cancer in 2000 and spent three years mourning him, the symptoms became so bad that I had to stop working and retire: pain and unremitting exhaustion.

I spent years researching fibro, its symptoms and any possible treatments. I'm now on Cymbalta for the pain and depression. For breakthrough pain I take Ultram. I take trazodone to help me sleep and I also wear a CPAP mask.

Various supplements have helped me get my life back, but I don't have enough energy to go back to work, which is not what I'd want to do anyway. Instead I volunteer at the Red Cross and our local Hospice.

Nancy
Co-Leader: Fighting Fibromyalgia
Co-Leader: The Breakfast Bunch
Leader: Buffalo Bills
-----------------
Dream it. Do it.


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
11/24/12 6:31 P

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I'm not sure exactly, but I can come pretty close: I can remember what the last moment I really felt GOOD was like! LOL

It was a spring day in 1975, there were wet leaves on the ground, and patches of snow that the Chinook wind hadn't gotten to yet. I was walking to school (college), cutting across one end of the campus to get to the dance studio... the sun was shining, and the baby birch trees that had been planted along the walkways had buds on them that shone with green and lavender highlights along the edges of the bare white branches... a gorgeous day.

That was the day my dance instructor told me I needed to go on a diet and lose weight. I'm 5'3, with broad shoulders and a wide ribcage, and a whole lot of muscle-- and at that time I weighed 125... I didn't even think about it. I was 21 and naive, and trusting, and blindly did as I was told... I lost the weight she wanted me to--and landed in the hospital... I ended up having to withdraw from school. I'm not sure where along the way the pain joined the process... but it's been a struggle with one thing after another ever since then...

And still...

I'm glad. I had to slow down because of this stuff, and I see so much more of LIFE when I'm not trying to do so much at one time!

Kathy emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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NEWVINE's Photo NEWVINE Posts: 4,608
11/22/12 10:50 A

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My fibro symptoms started when I took my job cleaning a school. The dr. said all the lifting,turning and long hours on my feet brought it on. The worst pain was when I removed the old slip grips on the shower room floors to put new down. Most day I bite the bullet and keep working.

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HEFFER2HEALTHY SparkPoints: (938)
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11/21/12 9:40 P

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I can tell that first, mine was a response to a bad car accident. Second, I can tell you that in one week I went from starting to recover and return to work to losing 7 lbs, and felt like I had the flu! From then on the testing and referrals began! I have been diagnosed/treated for about 4 years! I try to make the best of things, and try not to take a whole lot of pain meds, but tgere are days that I can't even function! I have always had migraines, but after being diagnosed they have gotten worse and more severe(nausea/vomiting)! I do have a blog that talks about my current lifestyle change, it is heffer2healthier@wordpress.com! It goes into a bit more detail about my "fibro fog" and other issues! Good luck and I hope this helps
Karin

MEG-NATALIA07's Photo MEG-NATALIA07 Posts: 679
11/21/12 6:24 P

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I had symptoms build up over time, but I can pin point on the calendar "the day it all began". Would any of you be willing to share your background of how it started for you? I'm curious if emotional or physical trauma, military service, moving, grief, etc play a part...

I want to learn more, and if you're willing to share I'd greatly appreciate it.


GRACE. BEAUTY. LAUGHTER. REST. COMPASSION. GOOD FOOD.


I love to cook and bake. I have compiled hundreds of recipes on Pinterest: Crowd pleasers: Traditional & Lightened versions of timeless favorites, as well as: gluten free, vegan, Paleo & Grain-Free... and a ton of Scones and desserts.
pinterest.com/willdance4joy/


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