Fibromyalgia Community
I posted this in introduce yourself, reposting it here.
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This patient support community is for discussions relating to fibromyalgia and related pain management.

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I posted this in introduce yourself, reposting it here.

I have not been diagnosed with Fibro or CFS. My doctor did do the 11 point test and ruled it out. I have taken a couple Fibro questionnaires on the web, and scored high on them. I honestly have no clue as to what is going on with me.  Before I even get into that, I do have to say, I have had a very low tolerance to pain, since I was a little girl.

Throughout my life, I have been being treated for depression and anxiety.  Also throughout the years, you don't know how many times I have been to a doctor with something wrong, just to hear them say, " Oh, you have depression and anxiety " as if the illness, or what ever is all in my mind!  So that was the answer to my headaches, along with being treated for IBS, and for the reason for my low tolerance to pain.

Approximately 3 years ago I went to the doctor for severe leg pain, and was diagnosed with sciatica.  An MRI showed 3 compressed discs with the nerve being pinched in one.
After that things seemed to go down hill fast.  I am just going to list what is happening.

1. Sever headache & facial pain, especially when I first wake up. I have to take my lyrica, and either 2 aspirin or if it is so bad, 1 vicodine. Sit there and massage my neck, jaw, cheeks, temples, and meditate for at least 15 minutes before I can even get out of the bed
2. I can't clean my house, just walking to the kitchen from my room, causes pain in my legs, and back. If I am doing dishes, I can wash a few, then have to go sit down for a few minutes, then go back to them. It takes me forever to do anything, and I will end up needing to take vicodine to be able to clean, then again later, because I will be in so much pain because of cleaning.
3. Fatique, I have no energy.  My sleep patterns are all messed up.  Sometimes I can't sleep and will be up all night, other times, I am ready to fall asleep early in the evening.  But even if I go to sleep at a good time, and get a full 8 hours of sleep, ( a new symptom I have been having for the past 2 months ) I find myself nodding off.  Usually this happens when I am doing something quiet.  I have nodded off sitting up in bed watching tv, sitting at the comp doing whatever, even playing games that keep my interest, in the bathtub and folding my laundry.  Some days I nod off 4 or 5 times, lasting any where from a few seconds, to an hour.  I have to go to a sleep center in 2 weeks to see if they can help find out what is going on, Doctor thinks, sleep apnea and Narcolepsy.
4. I get leg and foot cramps.  Plus I feel like someone is inserting an IV needle in the top of my foot or hand. ( IV's are painful to me ) I also get hot spots, usually in my leg.  Where all of a sudden it feels like I had a real hot heating pad put on me.  I will also get a sudden pain in my leg, feels as if a bone snapped in half, but that pain is gone as quick as it came on.  These do not happen all at once.
5. For the last few months I have had problems with my right leg, and both feet swelling. Right now my right leg is twice the size of the other one, and has been that way for over a week.  I asked my doctor what could be causing this, and he said he had no idea. Maybe too much salt. This comes and goes, but this is the longest it has lasted.
6. For a while my left eye kept twitching, that lasted for about a month, then stopped. But occasionally my eyes feel like someone shoves a toothpick in them.  Again, a sudden pain, that ends just as fast.
7. Sometimes I get pains shooting down my leg, from my knee to my foot. Sometimes from my elbow to my fingers.  Along with the pain in my arm, I sometimes feel like it is numb.
8. I have gained about 100 lbs in the last 3 years. I figured it was due to lack of being able to move around pain free ( so of course, I was not as active as I used to be ) and then I thought some of these symptoms were caused by the weight gain.
9. Now I am drooling. I am constantly wiping the corners of my mouth where the drool is coming out. I also have been choking on food a lot lately.  Sometimes I will be chewing, and a little crumb seems to be sucked down my windpipe before I even start to swallow it.

I am sure there are things I am forgetting.  All I know, is I am so tired of feeling this way, and not knowing what is wrong with me. I am tired of having to take this test or that test, and still not getting answers. I am tired of doctors thinking this is all in my head. I honestly don't know where to turn any more.
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Avatar_m_tn
Live in the North East?   New England area?   Did your mother experience similiar symptoms?  Sickly as a child?  Fatigue?  Pain?  Family history of cancer?  Pancreas, liver thyroid?  HAve you experienced cancer?  Hysterectomy?  weird rashes?  tiny red dots appear on skin occasionally?  neck crackles and pops?  Heart palipatations and chest pain?
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Avatar_f_tn
Live in northeast, us.  No to mother and most other stuff. Not a sickly child, but had very low pain tolerance, and fainting spells.  Told had epilepsy, but no fainting spells in 30 years.  Have irregular heartbeat, but was told that was due to the epilepsy. Neck is always stiff, does crackle & pop, ( sometimes sounds like those pop rocks candy ) and if I can get it to, cracks.  Sometimes cracking my neck will ease some of the pain in my head, ( Or I imagine it does ).   My mother had bad depression, which I inherited. Also all my siblings. Father died of alcoholism, at age 54. My heart does not palpitate, it feels like it is being squeezed at times ( told it is anxiety ) although there are times I can feel my heart beating in my ear ( along with hearing it ) and it drives me crazy. I do not have High blood pressure, it is so low, my GP used to tease me that I was dead according to my blood pressure, but knew I wasn't since I walked in there. He never said if that was good or bad.  Fatique as a child, I do not know, I think maybe so, because my mom said I was a lazy baby. Even though I could walk, wanted to be carried.   Its also hard to say if I was tired all the time because of any health issues, because I was on phenobarbital since I was 5 for the epilepsy.  Took myself off of it 30 years ago. The doctor has run so many blood tests on me, and everything comes back fine, except for my colesterol.  He just did an ekg and that was fine also. He asked if I wanted a stress test, but I thought the ekg and stress test were basically the same thing.  Now wondering if I should have got the stress test.  As in 5 above, my right leg is still swollen.  Last night I went to sleep around 2 am.   I must have woke with the bad headache again, I barely remember getting up and putting on the coffee.  Next thing I knew it was 5 pm, on my nightstand was a glass of milk, with maybe a sip taken out, and my bottle of lyrica and vicodine next to it, upside down ( I will turn them upside down to remind myself I already took them.  I don't remember none of it.  This has never happened before, and it did scare me.
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Avatar_f_tn
Hello...sorry to hear of all your troubles.
I have to ask...why are you taking Lryica if your doctor told you "no" to Fibromyalgia?
Have you thought about seeing a different doctor?
I suggest you list all your symptoms (catagorize them into body systems), limitations and meds you are taking. Take this list to your doc or a new doc and have them go over it with you.
Have you had an MRI of your neck?
Stress and depression alone, can cause pain...PTSD also causes MANY symptoms too.
I have no other suggestions for you...except to try and alleviate the strsses and worries in your life...easier said than done, I know :(
I wish you luck.
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Avatar_m_tn
PTSD linked to soldiers can be Mycoplasma infections, not just stress, but an actual infection
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Avatar_f_tn
I have a pinched nerve in my back, and very low tolerance to pain.  Doctor put me on Lyrica for Neurapathy. No MRI on my neck, but once this sleep test I have to take is over, I am asking for that.
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Avatar_f_tn
Fibromyalgia tender points can come and go. Some days you may have all 18 tender points effect you while the next day you may have only a few effect you. I would get a second opinion. As far as the weight gain I would have them check your thyroid and have an MRI of your brain and possible. The drooling, choking, and shooting pain may be a neurological problem; for instance, parkinson or such. The swelling of the leg and feet could be liver or kidneys. It would not hurt to get them tested. Good luck to you.
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