I am a 38 year old Mom of two. I work part-time generally, but full-time when required. I work in healthcare. My boss does not believe in fibro and is not supportive, but I love my job and that patients so that is why I stay, plus of course, I need to work to live.

I have had fibro for almost 20 years. Officially "diagnosed" last May. Finally after years of pain and negative test results; I FINALLY researched on my own and found a doctor that would listen to my whole story without any preconceived notions or judgement.

For years I thought maybe I had MS? or chronic fatigue? or I was just plain going crazy. Since dr's often thought it was "hormonal" and "in your head", and all my test results were negative, I had no reason to not believe them. ALthough I knew my body was telling me different.

I went through post partum depression after my first pregnancy which I think was brought on my a traumatic delivery and no time to heal, colicky child and sleep deprivation -- I was put on Paxil and Rivitrol for panic attacks.
I was unsure if I was going to have any more children and waited 7 years before having another, I was so afraid of PPD again.
I also required a few surgeries for repair after my first child and was not too anxious to get into all that again.
I will have my last major repair/restructure in 2010.

I had always had "hints" of fibro from my early teens onward; once told I perhaps had chronic fatigue syndrome; but then I would bounce back and be fine for weeks. I believe that the birth of my first child escalated my fibro which had been manageable until that time. Perhaps even lying dormant?....
One shall never know.

The only test result that was of any significance was that I had an elevated ANA titre, but not high enough to be considered lupus. And then when I had my first breast surgery the surgeon told me I had a mess of fibrous tissue that was a light bulb moment for me and I started to research fibro. I had ALL the symptoms, it was just like I was reading my life on paper....

After my first child it was like my body rebelled and I got into all kinds of pain, muscle spasm...this was the start of my downward slide.

I have not taken Paxil for years, but still take the Rivitrol at night. I am afraid I am addicted to it, well, no, I know I am addicted to it. It stops anxiety and helps me sleep a bit better and when I try to stop it all together the anxiety escalates; it is a terrible cycle.

I have tried many NSAID's, but due to my stomach issues I am not able to take many of them. Lyrica is the next thing that was offered and I have not been able to tolerate it. Right now sitting on my counter I have 25mg tabs to try. That is the lowest possible dose.
I am skeptical and so have not even opened the container.

From the moment I had my first child I have slide farther and farther down the ladder of symptom control and being able to cope.
Along with fibro I have suffered terribly from interstitial cystitis, IBS, GERD and fibrocystic breast disease ( for which I have had surgeries and had to take numerous bouts of antibiotics for the intense pain and swelling of fibroadenomas), chronic headaches, terrible terrible muscle spasms - out of the blue, no rhyme, no reason, insomnia, palpitations, heat intolerance, and now I am afraid, depression; although I do not want to admit that.

This is what is sending me to this board.

I do not think I can cope. My children are still young and I am trying to be a good Mom for them, but most days I am not. I am more irritable and agitated, my brain has gone to mush; I have memory difficulties, word finding difficulties.

"I" am lost. Lost in a haze of pain and despair. I have lost my hope.

Last night I slept not a wink. The muscle spasm in my back and my one leg brought on some very desperate thoughts.

I found this board by googling and just needed to talk to others that have similar experiences? are going through similar symptoms?

Thanks for listening

Hello and Welcome,
I sure hope you can find a good dr that can really be of help to you soon.
Did you find our useful sticky thread above yet?
http://neurotalk.psychcentral.com/thread304.html

You might have found most of the sites in your searches already, but it's nice to have them in one place, to refresh the memory .
I get brain fog too sometimes.
I have thoracic outlet syndrome, but some of the symptoms overlap with FM.
the trigger points, muscle pain, spasms etc - quite a few w/TOS end up with FM as a co dx eventually.

Hi Piperswife,

I have been told among other more primary things that I have a dx of fibro. What I do know is that my muslcles ache and spasm alot.

I also have TOS and a c-spine issues and the muscle issues of fibro cetainly do not help those. Where I focused my main effort the last year or so was with my metabolic or endocrine issues. Sometimes to me it felt like my muscles just were not getting enough oxygen and were just always tired.

I have a thyroid dx and sometimes if your thyroid is off it affects your muscles so afetr I had my thyroid taken out we worked to balance my levels with medication. Have you had your thyroid checked. Thyroid issues and fibro are often found together.

So going on with my story, even though I balanced my thryoid issues it still felt the same my muscles felt deprived of oxygen and I was tired. And the mucle pain...ugh. But everything came back pretty much balanced except one thing that my endo checked on a whim. I was iron deficient, had iron deficiency anemia. I was not toally anemic because my hemoglobulin looked good but boy was my iron low. And so was my vit d which also if low leads to muscle weakenss and pain.

I have worked very hard to correct both of these metabolic problems. Part of it is I lose too much blood with each of my periods and after years of that I did not have enough iron and was not replacing it. And the thyroid problem doesnt help because it makes my periods heavier leading to low blood loss.

There is a proven connection with fibro and iron deficiency anemia. I mean why wouldn't there be. Your muscles need iron to make blood that can carry oxygen. Did you know that restless leg syndrome is a sumptom of iron deficiency. As are heart palpitations (although this can be a symptom of thryoid and other conditions so please get it checked out by your doc). A frontal headache is a symptoom lof low iron and fatigue as well. And funny but that my IBS, alteast the diarrhea was patially related and has diminished with iron treatment (lol it constipates you at first but now I am no longer panicked to know where every bathroom is) I will also add that being over estrogenated (birth control pills in my case) also contributes to IBS from some of the reading i have done.

I would tell you to ask your doc to do a blood panel of total tion, iron binding capacity and ferrtitin. Also ask him to test your vit d 25 hydroxy. Vit D deficiency is a very hot topic right now and docss are starting to pay attention. I just wish they were all educated about iron deficiency which is underdiagnosed.

If it comes back low you can try over the counter iron supplements but it just made my ibs worse and the blood test showed i was not absorbing it as well.

So I take repliva, a precription iron pill that is very easily absorbed. Its funny this week I went to my endo doc and the drug rep for repliva was there and my doc introduced me to her and said I was the reason, because I found the literature via the internet and told my doc about repliva. I was the reason that she is better educated about iron issues and that she now checks all her female patients.

I still have fibro and those tender points, but atleast for just me the iron connection has helped. I am now exercising and working out with a trainer and I can deal with those sore muscles much better now. The headaches are gone as is the fatigue.

So I urge every fibro patient to look into your iron and vit d levels.

Please dont try to treat any iron problem on your own. You do want a doc to do it with you.

And please do not forget the vit d. Low vit D is definitely connected to muscle pain and weakness.

Hope this helps and keep us posted.

Hello and Welcome to Neurotalk - you will meet many great people here who I am sure will be more than happy to help you if they can!!

I am so sorry to hear that you have Fibro and I really hope you can get some much-needed answers and treatment real soon!! I also suffer from Fibro but I have another neurological chronic pain condition which I developed when I was 12 years old (now 13) and it makes it really difficult for my Doctor to diagnose me although he HAS said he is 99% certain that I have Fibro as the two conditions often go hand in hand unfortunately!

I have tried all sorts of pain medications and understand your frustration about getting atticted to them. I personally, chose to come off all of my meds as they just weren't helping me at all and I think they were making me worse as I was a LOT more drowsey on them and the side-effects often outweighed the benefits!! Everyone is different though and I would speak to your Doctor and see what he/she say's to do - as you said, it's a very vicious cycle and no two people are the same unfortunately!!

I have most of your symptoms and often feel very angry and frustrated. The main symptom that I suffer from and what is most debilitating is the fatigue - I often am not able to get out of bed as I am just so tired and it really affects my school attendance and other issues unfortunately!! I also have the pain in the trigger points near my back, nneck, shoulders etc which is really painful and VERY difficult to treat in my case ... I think it is harder as I have about 3 other conditions to try and treat as well as the Fibro!! In my case, I have noticed that my symptoms are somewhat worse when I am on my periods and the first few days before I am due to start. I started my periods when I was about 11 years old and never had any problems up until developing Fibro but it seems at that time of the month, everything is SO much worse and I am often unable to get out of bed for those 5 days!! I did speak to my doctor about it and he said that he believes Fibro could be an hormone inbalance and a lot of research is going into it at the moment!

Please do not give up hope!!! If you don't have hope, you don't have anything!! I too find it very hard at times trying to cope with this awful disease and I feel as though I can't go on at times and get VERY aggitated but then I realise that things could always be so much worse and I am lucky in many ways! When I am having a bad day, I think of the good things that I have in my life - my pets, my family etc etc and it DOES make a difference and makes me somewhat less agitated. I have also seen a Psychologist and she has helped me quite a lot with some of my problems. That doesn't mean that I am still not frustrated, of course I am and I think there would be something seriously wrong with me if I wasn't but I am able to calm myself down more now and don't take it out on my friends and family as much as I used to!!

If you have any questions, please let me know as I DO understand some of what you are going through and know how frustrating it is when friends and family often don't understand how bad the pain is!!

Take care and sending you many pain-free hugs!!
Alison.

~~
Thank you for taking the time to tell me your story. We have a lot of similairities and I thank you for all the advice. I have not heard of repliva; but I will avidly do some research on it.
I have worked in healthcare for 18 years so I take full advantage of having of working in our lab as well... a multitude of tests have been done over and over again.
I have had every blood test known to man kind ! (ha ha) and I have even re-done my own tests when they have come back negative.

I seriously doubt the the thyroid test is accurate for me. I know that palpitations arise from somewhere. My ferriten is not bottomed out.
I think it's stress related? or panic attack related? No one knows and I too am at a loss to explain. I have had dopplers, EKG's, 2-D echo's... seen a cardiologist, who simply wanted to place me on a beta blocker. No, I am not a drugstore; I do not want a pill for this and a pill for that. He obviously had no idea why palpitations were happening; as I sat there and read my own 2D and watched his quizzical face.

I have had CT scans, MRI's. Nothing ever shows up.

I have a chronically inflammed lymphatic system, having a large inflammed lymph node removed from my groin last year; it was thought to be lymphocytic lymphoma and I thought VOILA !~ at last a diagnosis (even though that would have been heartbreaking) -- but the cancer clinic deemed it "chronically inflammed enlarged lymph node" no malignancy.

The specialist I went to, was wonderful, he indeed believes it's fibro. I scored high on the physical and mental tests. My own family doctor too, is wonderful; it's my boss that I was speaking of (doctor) that does not believe in fibro; so therefore lacks the compassion when I am not myself.

My brain has had it, turned to mush because I am so sleep deprived and working with daily pain.

Thyroid has always been fine each and every time I have had it tested, same with Vitamin D. Iron goes up and down, but hemoglobin is always good. I check ferriten levels often; and I do take an iron supplment, as well as Omega's, multivitamin...medication consists of Losec, Motilium and Rivitrol prn or as required.

I have been to the sleep clinic because of chronic sleep deprivation. I went twice. All is normal. I do not have restless leg syndrome (they say)

I try and was told to do atleast 20 min of walking a day. Somedays I cannot manage to get out of bed, let alone on the treadmill. I only go to work, push to go to work because I have too.

I do massage therapy, physio therapy, accupuncture, meditation and have changed my eating to almost purely organic; no junk.

I am simply not coping well.

I am going to start injections into my trigger points to try and allow the muscles to relax so that I can manage some relief.

I wonder if the cold climate I live in, the change in seasons, the drastic change in barometric temps, is not good for a person like myself? ....

I feel that I have done all that has been asked of me, tried everything over the rainbow that has been suggested to me and still I am becoming increasingly worse and more desperate to try and find pain relief, sleep and it would be really nice if I wasn't so bitchy and agitated towards those that I love.

I have utilized all the links and have been reading and reading and reading... this is a wonderful positive site... !! thanks

Hi ((Piperswife)). There are lots of us here that completely understand! I couldn't possibly add anything more to what's been said here. Although I must say, I love to take my epsom salt hot soaks in the tub!

And yes, the weather! It seems any changes in the climate affect me and this winter has been a bear with cold snaps and up and down temps.

LOL I end up wrapped up in hot blankets a lot too. Last night I had 5 blankets from the dryer wrapped around me before I finally began to feel some comfort.

I think I will go get some epsom salts...
I am feeling (mentally) a little brighter today
I think I was in a very very bad place and thank goodness I found this board....... because; well, I am sure you all understand what I mean

Thanks all for caring;

I am so sorry to hear that you all are in so much pain but I just thought I would pass this along. My aunt has had symptoms of fibro for over 20 years and it has been a constant search for pain remedy. A few years ago she discovered the wonderful benefits of taking epsom salt baths. Then recently we were in Kroger and found a new brand called Pepsom Sports. She likes it better than the generic kind because of its spearmint scent which she claims helps her to relax. Anyways I wish you all the best and recommend at least trying a bath in Pepsom because every little bit of pain relief helps!

Hello Piperswife. . . I just found this site today and it is nice to see there are so many people out there dealing with FM. I hate mentioning FM at work becuase I feel that they are just humoring me. By the time I get off work, my hands, arms, shoulders and neck are in so much pain, it hurts to drive.

One thing that has done a lot of good for me was anti-depressants. After the doc dx me, he sent me to a neurologist for confirmation. The neurologist prescribed the anti-depressant. Reading what you have written, sounds like it would be a good start. The anti-depressants also have a nerve blocker in them that assists with the pain. When I worked a consistant schedule, it was like I was a new person.

Also, instead of blankets from the dryer, get you an electric blanket (and an electric wrap for the couch). On days when I hurt real bad, I turn my blanket on high about 15 minutes before I go to bed. When I climb in and feel the heat all around me, my body starts to relax and unknot.