Discussion in 'Fibromyalgia Main Forum' started by sfrazier, Jan 25, 2007.

  1. sfrazier

    sfrazier New Member

    okay i'm starting a post about something i know has been talked about a lot on here but i can't remember it's name to look it up.

    I got up this morning in soo much pain in certian areas. in fact it took me three tries before i could figure out how to get off my couch. the pain is a burning type of pain but also a heavyness to it too. my left leg has the worst of it and when i ran my hand down my legs the left leg where it hurts is swollen compared to the right leg.

    Some of these areas i know for a fact are fibro areas but i have never had these areas swollen. also some of the areas are not fibro which leads me to believe that they are the myo something pain.

    Please someone help on this one. I'm a little scared on this one cause i can easly describe this pain as a ten and i've only been a ten twice before. I'm also thinking of going to the emergency room if my morning meds don't dim the pain.
  2. all i can say is..

    i have the pain in my body every morning that i wake up.its always there.

    i have fibromyalgia and chronic fatigue syndrome.

    the important thing to remember is,not to panic about this pain.i know thats easier said than done for people who are newly diaognosed with this illness.

    ive had this illness for many years now,and the pain no longer scares me,its the fibro fog that scares me sometimes.but im trying to be calmer about that too.its just taking a bit longer.

    what you need to know is.waking up in the morning in pain is part of this illness.slow down,take things easy.i never rush to get out of bed.if you do force these stiff and painful muscles,then you will injure them,strain or tear them.i know,ive learned the hard way.

    use the first part of the day to manipulate those stiff hard muscles,rest a bit,then go get washed and dressed.then rest a bit again.

    no pain med has taken my fibro pain away,but the occasional anti inflamatory pill does take that neck and head pain away for me.on a sad note though,the anti inflamatory pill will make my asthma worse,makes me gasp for breath.

    one day you will be where i am now,ive had this illness for many years.went to a pain management course that did have some usefull things to learn me about keeping calm during the painful flare ups.not panicking.

    we arent dying,so try not to panic.but learn that your bodies muscles have a illness,they arent the muscles you once knew and loved,they will no longer let you be the superman or superwoman that you used to be.

    this is a new us,weve taken care of family,now we need to take care of ourselves.please dont be scared,but visit us here,regular.and read how we are coping with this illness.

    take care
    love fran
  3. charlenef

    charlenef New Member

    i have cmp and fibro but my legs have the feeling you describe but there not swollen charlene
  4. sfrazier

    sfrazier New Member

    spamula - Thanks for the response. Trust me your not scaring me I'm doing that to myself quite well. lol

    flossyfudlefran - I have had fibro now going on 4 years. I'm very use to the pain that goes with it since my pain is a constant and has never gone down below a 5. However this is something new simply because it has taken me to the level 10 and i've only been there a couple of times. As for taking it slow my kids sometimes tease me and say that a snail moves faster then i do somedays. lol. Thanks for your response though. Every little bit of information that I learn about this fibro thing is something i apprecaiate

    charlenef - Yeah this is the first time i have ever noticed any swelling too. Every time i go to my pain clinic they always check for swelling. Maybe I should give them a call and ask them why they always look for that and is it something i need to go seek medical attation for. Thanks for the response. I appreciate it.

    prickles - Pickles you are one of my favorites on here. You have so much information and I just knew that if you were on line you would know what i meant by that myo something. lol. The fact that you don't think it is the myofascial that is causeing the pain isn't exactly what I wanted to hear. I really hate going to the ER or for that fact any new doctor cause everytime i do they tend to find something new for me. lol. could this be from my bursitus that i have in my hips by any chance?

  5. sfrazier

    sfrazier New Member

    Just wanted to let everyone know that i did a little google searchs on bursitus and the more i read the more i'm pretty sure that is what is going on with my hip and leg. they say to take anti inflamitories for this but with all the meds on i'm not suppose to take anything like that. I guess i'll be calling the pain clinic and see what they say. I have an appointment in a little over a week so they will probably say they will check it out while i'm there but they can tell me over the phone what i can take for the infamation right now i would think. Keep your fingers crossed....SueF
  6. amwhite

    amwhite New Member

    Dear All,
    My closest friend on the planet has been sick with CFIDS for about four years now. Like a lot of folks, her symptoms can really be traced back to childhood. Her immune system never has worked correctly. Four years ago, it seems to have gotten stuck in the "on" position. No doubt, like many people with CFIDS and FM, her body is trying -- albeit unsuccessfully -- to beat any number of viruses and mycobacteria (HHV6 and Epstein-Barr are likely culprits). The combination of pathogens and an over-active, under-effective immune system would be sufficient to cause all of her symptoms.

    Severe pain has been an ever-present part of the deal for her. Particularly a deep, unreachable pain throughout her back that often radiates down into her legs. Over the past few years we have come up with some strategies for dealing with it that have helped. First, a few things that haven't helped:

    MSM, all kinds of NSAIDS, opioid pain meds (take the edge off but that's it), and the list goes on. I'm drawing a blank on the gazillion things we've tried, so will have to update this post later!

    Here are things that we wouldn't trade for anything:
    -TempurPedic mattress (Sealy makes an even softer version)
    -Broad spectrum light with a sunrise mode from Nature Bright. Can be purchased on Amazon. We use the "inspiration" model. Pseudo-sunlight helps entrain (set) circadian hormone cycles, which has helped her get going in the morning and have a relatively normal sleep/wake cycle.
    -5-HTP (50 mg per day for 1 month, 100 mg per day thereafter). This raises serotonin levels in the brain/body safely. Causes some sleepiness for first few weeks, so she takes it at night. Has improved her mood and helped a little with pain. TIP: If you don't feel sleepy when you first start taking it, it probably will not affect your mood/pain in the long-run. If it works, expect three-four weeks before results.
    -Opioid pain meds. While she tries to avoid them at all costs, they have been a life saver from time to time.
    -Zanaflex. An antispasmodic (muscle relaxer) that acts by reducing signals to the muscles. It does not weaken the muscles. 8-12mg taken PM has helped her awaken with much less pain and stiffness. Again, expect a few weeks for benefits.
    -ImmuneTransfer C from ProHealth. I highly recommend considering transfer factors for those not already taking them (please visit for details about them). She has been taking this particular product for 3 months now and we are beginning to notice significant signs of improvement, particularly with stamina and energy level. Less dizziness and more drive. Her pain has actually worsened off and on a little over the course of treatment, a promising sign that her immune system is making a push to get rid of the virus(es) with which she is likely infested. This is normal and we expect the pain to go away eventually -- hopefully completely and once and for all, but we'll see!

    I hope this long, rambling post helps someone. I am not a sufferer, but a researcher in love with one! I just wanted to share some of what we have learned along the way.

    I wish you the best of luck with your health and your lives!
    Aaron White, PhD

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