Looking back, I can see the disease at my heels

Now that I know, I can look back on my life and see this sneaking up on me for a long time. From childhood there were signs, Rheumatic fever, growing pains, dental problems, female problems, and I always out ran them out worked them. Too bad we're not born with more information! How about you, can you put any pieces together?

7 years old my first migraine. Remember it like it was yesterday. Cold weather always made my back hurt or so I thought it was doing it to everyone. For years I thought I was a nutty person who was imagining I was sick. How can you feel this bad at so young for so long ? It baffles me. I’m 39 feel more like 99 years old. I’m so tired.

Definitely! I’ve never felt as good as everyone else around me. I used to think people thought I was lazy. Still do sometimes. I had Lyme disease 7 yrs ago, back surgery 4 yrs ago and now this! Always had ridiculous things happening with my health!

I feel the same since my spinal surgery. I know how awful you feel.

When I found out I could put everything together! All of my problems, surgeries and pain. It's crazy!

SK, you bring up such an interesting point, looking back it all makes sense !!! Headaches, RLS, horrible menstral cramps and I always seemed tired, never could get enough sleep, even working full time pre-fibro I always had to come home and take a nap, I , like you out ran it, I just kept going, and going… My dad used to say when are you going to slow down. Maybe if I had slowed down years ago I wouldnt be such a mess today…???

Great post you got me thinking …
Hugs & blessings

Hmmmm...a darned good post, SK. My left shoulder has always been super-tight, and I couldn't stand to have anyone to massage it because it hurt so much. Don't know if its from fibro or not. Like others, I have sensitive teeth, TMJ and terrible pain during my menses. Feet problems, worsening when I got pregnant and culminating with barely being able to walk until I got shoe inserts. Badly sprained my ankle about 15 years ago and it took many YEARS to heal. I think that was the real start of it. Then back problems which started from pushing patients in wheel chairs. Back problems became horrendous about 6 years ago. It wasn't until 3 or 4 years ago that I knew something was wrong but I thought it was my herniated disk. Then my entire body went haywire about 3 or so years ago. That was the tipping point, thanks to a physically difficult job. And thus, fibro was born, over a flaming half-shell, hee hee.

I know what you mean. When I was twelve I had serious abdominal cramps etc. I was sent to a surgeon, he did a colonoscopy, then told my mother I had bad nerves! If so I had bad nerves at a young age ( 6 yrs ) and they lasted for years. I also had 5 miscarriages between my 2 children. My internist says this is related to the fibro. By the way, my abdominal problems disappeared 2 1/2 yrs ago, after I got my diagnosis.

My mom was in the hospital room when I was diagnosed. As the doctor started explaining the symptoms my mom became white and said that explains her since birth. I felt the same way however was still in shock by the diagnosis that I couldn’t process much less verbalize it. I have always had trouble with pain, sleep, difficulty healing after numerous surgeries. I had exploratory throat surgery at 5 due to extreme hoarseness. They were concerned I had cancer because I cried so much and was always hoarse. It was a muscular issue. I still fight the same hoarseness issue as an adult. I was shocked after diagnosis when I took a muscle relaxer and my throat suddenly felt better. My asthma was actually issues with the lining/muscles around my lungs just hurting. I could go on forever. I feel luke my whole life it alwsys has chased me. I would go full force and get sick forever finally get better and repeat. I started running to improve my health. After about a year, I was running and suddenly got a pain in my pelvic area that almost made me drop. i couldn’t walk. My husband picked me up and the pain has never left since. That was three years 2 months ago. I have since had four abdominal surgeries, and two more hospitalizations totaling six weeks for seizures of unknown cause. I finally gave in and am retiring from my project manager job at 36.

Oh my, what an ordeal you have been through! I hope that they will get you straightened out once and for all right now! It has always taken me longer to get over things too, even if an incision heals, it is like there was always something else pulling you down!

Persoally with me it was all female, one D&C and exploratory after the other, finally at 23, they opened me up down at Sinai Hospital in Baltimore, gave me a total pan hysterectomy. He and the head ob/gyn told me that I was the worst they had ever seen with PID and endometreosis, full of absesses and adhesions, was in the OR forever! the pathology reports in short, was cancer in the making. Took me years to be able to stand up straight! It surely saved my life, but took years off of it at the same time!

My GP is very adamant that people should NOT run, that it jars you internal organs and damages your joints! He doesn't get on the soap box about much, but he does about that!

I have had something like a seizure, but my Rheum says they are severe muscle attacks. I have not had a bad one since I started the Enbrel. So I guess it's one of the autoimmune diseases getting me!

I hope you have good Drs caring for you, and a wonderful family supporting you. This family will support you and wish you well all of the time!

Be well, be happy,


But Luna, you really do look good! I know you have suffered, and still do, but you are still 'in the game'! ha!

I hope the Lyme is gone, and the back surgery was a total success. Hope you can kick this fibro next!

Wishing you well,


Docs are now saying that running causes more trouble and I have also had docs tell me that they no longer ascribe to the old saying “no pain, no gain”. This was after my second or third knee surgery and I was antsy to get back to going full speed. I was a distance runner for many years and it certainly had a deleterious affect on me. Brisk walking seems to be the way to go, if you are up to it, that is.

Once in a blue moon, my grandson will get me on the bike, we have a place we ride, and if I can do it, it helps open up my back and SI joints better than anything, it's just feeling well enough and having enough energy to do it. this is usually when he is staying for days on end, so he can really wear me out! I love it though, he will be 11, he still tells me that I'm his best friend, I am on the coat tails of that! He will change soon, I know, so I am glad for every moment!

See, you really are 'banged up'! Admit it!

You should have your own home improvement company!LOL! I need some dry walling and electrical work done, how about it? I hear you work for cheap and do a great job! lol!

Alright, I'm gonna go shopping online for a while!

Ok, I admit it. But only under protest. You are right, I am cheap- only require food and a place to lay my head. Oh, yeah, the food must include peanut butter chocolate milkshakes!

If you get to Victoria Secret while shopping online, my hubby wants me to get the Christmas teddy. I wear a size… Yeah, not giving that info out to the world. LOL

I'm wondering now, after reading many of your touching comments about your own poor early health, if my horrible, horrible PMS cramps were related to my fibro? All I know is that I should have had some sort of treatment but never got any and suffered terribly with them for years.

My surgeries were emival of non-endometriosis scar tissue 2x. Worst case the head of GYN at Cedars Sinai in Los Angeles had ever seen. The scar tissue also strangled and killed my gall bladder- something the surgeon had never seen. I then had a partial hysterectomy at 34. Left my ovaries because of family history of breast cancer. They ten found a illioinguinal hernia which had to be repaired, after which I developed a neuroma which was removed
Ten days later I fell on my stomach (clumsy as can be) and tore the incision completely open. It took just over two months to heal from the inside out. I now have a femoral hernia and my surgeon is waiting for my fibro to be better controlled. She said the myofascial tissue will never heal right now. Oh and my uterus had adenomyosis when they got it out…the cramps were SO bad bc of fibro in hindsight but also because my uterus was eating a hole in itself.

I have since been told the same thing about running by my pain management dr, neurologist and rheumatologist. It makes sense but dang I miss it! It was amazing stress relief. No exercise for me for now. I am working to just be able to clean the house.

Interesting about the muscle spasms. Thats such a better explanation for what I experience- like a full body muscle spasm and once it starts the only thing that stops it is IV or an injection of Ativan. When they are bad (3-4x a day) IV muscle relaxer kept them from happening. With Ativan injection at onset it usually takes 45 minutes to stop. Interesting to me was last year I was good they had been gone (prior to fibro diagnosis) I donated blood for the first time and was so “sick” for months progressively getting worse. The first time they began following steroid trigger point injections. I had never done well with oral steroids interestingly…

It is so refreshing to hear stories like mine! I spent 4.5 weeks last summer and 2.5 weeks this summer at Cedar Sinai with doctors stumped. They got fibro this year but otherwise they were and are stumped by my unusual symptoms. Like others I have had 2 positive ANA but lack other signs of lupus.

Petunia, I’m also really starting to wonder if my horrible menstral cramps is related to fibro, I’m talking about debilitating pain every month since I was 12, oh how I suffered till I discovered Motrin, and naproxen , the past two years it’s gotten worse and a D&C & uterine ablation has not helped the cramps…
My GYN & I agree, that my pelvis would be a nightmare of a surgery, with 2- c -sections, and diverticulitis twice, endometriosis & scar tissue, surgery would be risky , mainly to my bladder & bowel … Ugh
Maybe an endocrinologist can straighten out these hormones … Lol

Hugs to you

OMG, Dee, you have so much going on in that general area! I'm wincing as I read the list; it's very nasty. No wonder you've had a ton of pain with endometriosis. I understand it's horrible. And much the same with diverticulitis. I agree, not a great plan to do surgery there.

I was like you, Dee, for years and years. I don't know what caused the cramps but they were excruciating and disabling for a few days. I only mention them because others here seem to suffer them too and I do wonder if there's a link??

Hey, maybe an endocrinologist is just the person for you...

It outta be illegal to suffer from all of those ailments!


Petunia Girl

You know both Lupus and Fibro are considered 'the great imitators'. I have had 3 full head MRI's looking for lesions that would point to MS or Lupus, but all have been clear. When my GP told me I could have a spinal tap, I told him ONLY if he would do it, he said, no way, they don't even use X-ray any more to guide the needles. Now that was all I needed to hear to know that I will never willingly have one done!!! From all the pain management injections and milograms, I just got to such an aggitated state that I could not be touched. No massages, acupuncture or chiropractics.

I have come to know that the horrible spasms in my rib cage are Costochondritis, but I get this starting in the legs or ribs, and it takes over my entire body. I was taken out of the pool, because of this. I was so bad that I looked like I was going to give birth out of the upper back and neck area. I afterwards feel as though my entire body has been ripped to shreads, like the muscles have just been 'sliced and diced'. Like I said, they are not nearly as severe since starting Enbrel. So I would have to say it is the disease hitting my muscles, if it can eat joint and bone, a systemic disease can surely do a number on muscles.

I was referring to them as muscle seizures, and after the MRI's came back clean was told I could not consider them seizures, but instead severe muscle attacks! Wonderful, huh?

Are your fingernails 'pitted'? Like someone has taken a small nail and made dents in them? That is how I was diagnosed with Psoriatic Arthritis, as I have never had Psoriasis, but my grandmother did, all my grandkids do, my son has the pitted fingernails and a back so bad, he has had his degenerated discs replaced with silocone.