After years of feeling crazy, have I figured out what might be wrong?

Discussion in 'Fibromyalgia Main Forum' started by lnrussell, Feb 19, 2014.


Based on your experience (personal or other ppl's stories you know), does this sound like FMS?

  1. Yes

    0 vote(s)
  2. No

  1. lnrussell

    lnrussell Member

    I don't have a diagnosis of FMS. It was recently mentioned to me as a potential cause and I am seeking medical advice soon.

    Over the last 4-5 years the pain that I experience has become far too frequent and far too painful to ignore. I used to go a month without most of my issues. My symptoms used to flare around my period, and vanish with it. I figured it was normal. Now it seems like I face symptoms daily. If it isn't one thing, it's another... but it's usually everything at the same time.

    I get cluster headaches and migraines that will last for up to over a month at a time. I have IBS-C. TMJ. Severe and seemingly impossible to cure Acid Reflux. Restless legs. Extreme neck and back pain (I have S shaped scoliosis) but it isn't severe, my muscles (particularly my back, neck and shoulders) feel like they have hot water running down them constantly. My feet go numb if elevated more than a few minutes, so do my arms if I fold them over my chest while laying down. My eyes hurt 75% of the time... I know that sounds weird but they do. The muscles hurt when I try to look around. I have the most bizarre pressure in my ears, but trying to "pop" them only makes it worse. The feeling of my skin being pushed or pulled hurts and then itches (I immediately try to rub the feeling away). Everything is amplified when I'm on my period, which is extremely painful on it's own but only lasts 2-4 days - nothing about it is "regular" either. You'll know just as well as I do when it's going to come. And, YET, the thing that scares me the most is that I don't remember things. I can't tell you much of anything about my high school or college career if it didn't happen more than a few times. Some of my teachers names and/or faces are big blanks - I mean... come one... I'm 25 and it's been this way for years. Important events are slightly easier to remember, but my family or friends will talk about a story and all I can think is "that never happened.... did it?" I don't even slightly remember these things to the point that I will cross check what they said w/ someone else who was there. I bruise like a peach. And I'm always so friggin' tired. I want to sleep forever... but can't. When I lay in bed too long I get a migraine. ha! I have severe night sweats, and wake up feeling shaky, like I have the flu (particularly after naps). No matter what I do I'm uncomfortable. I have to bail on plans all the time bc I just don't have the energy. I can't make it to work because I don't have the energy to get ready. At least not in the morning. I get a mild burst of energy around lunch, it slumps down again a few hours after, and picks back up again for a little while. Bedtime rolls around and I toss and turn, can't get comfortable, can't fall asleep, and wake up at everything. I have no friends anymore. I feel like I'm falling into a ditch that just keeps getting bigger w/ no way to get back out.

    I feel like I could list a million more things, but I'm sure this post is boring enough as it it. I just want to know if this sounds like the experiences that any of you face as well... thank you for your time.
  2. TigerLilea

    TigerLilea Active Member

    I would ask your doctor to check your hormones. I was surprised to read that you are only 25 because you are describing what a lot of women experience as they are going through perimenopause.
  3. Soul*

    Soul* Well-Known Member

    Much of what you describe is familiar to me. I have ME/CFS diagnosed since I was 27 but not FM.

    What I understood from FM diagnosis is that you have to have the tenderpoints. I don't have those.

    Noone wants to stop living their life to the fullest and to me the biggest lesson has been regardless of diagnosis etc I had to start trusting myself that what I feel is what I feel and I have to take action to that to the best of my knowledge and also understand that others can try to give me advise based on THEIR experience and expertise but I have to feel for myself what are the right choices for me.

    There is no definit way to recovery that fits all and though it would be much easier to let someone else set our course to what is best for us they just can't. After years and years of following other people's advise the best thing that has given me the most improvement has been starting to listen to that which I feel that might be best for me. All the treatments etc I undertook have mostly caused me a lot of extra suffering and stress and right now for me the very best way to cope and increase my health has been stopping all the doctering and being a constant patient but accepting where I stand and giving new meaning and purpose to my life without constantly focussing on being ill.

    Wishing you lots of strenght and wisdom and don't be afraid to so no to things that don't feel right for you even if they say 85% etc benefit from it. You are probably right if it doesn't feel right! I lost a whole lot of time and had a whole lot of extra suffering and going back in health by thinking I had to try it all or else would be seen as someone who doesn't want to heal. If people say it won't hurt to try, think again. It CAN hurt A LOT to try. Even taking supplements etc CAN do a lot of damage if the body isn't able to process it all in the way it is supposed to as is the case with ME.

    Don't wait for the answers to start making the choices that are best for you! Wishing you lots of strenght and wisdom and all the very best possible.
    Last edited: Feb 19, 2014
    freida likes this.
  4. IanH

    IanH Active Member

    Inrussell: Are you being assessed for Lyme infection? If you don't have such an infection then your symptoms fit the criteria for ME with FM. You do not need to have the tenderpoints to be diagnosed with FM. They are now redundant. The symptoms you describe are common in FM. it does sound like a weird bunch of symptoms but be assured they are the symptoms of FM. It is unlikely that ME/CFS and FM are actually different in many people. It sounds to me by your description that you have both criteria/conditions remembering that these labels are just descriptive of the symptoms.

    To reduce your symptoms somewhat you need to take the following:

    methylcobalamine sublingual 1 mg daily
    coenzyme Q10 (ideally ubiquinol but ubiquinone will do) 150mg twice daily for three weeks then daily
    vitamin B6, 100mg daily for two months then 50mg thereafter.
    methyltetrahydrofolate ( an active form of folate) 1mg daily for two months then 1mg every second day.
    magnesium citrate or other form (400mg daily)
    vitamin D3 5000iu daily until summer then 3000iu daily (or maintain 5000iu if you get little sun)
    zinc gluconate or picolinate 25 mg daily for two months then 12.5 mg thereafter
    DHA/EPA mix. 2 grams daily. The mix does not really matter.

    Optional but helpful:
    glutathione 500 mg. This is difficult to take. You can either get 50-100mg sublinguals or just put the 500mg under your tongue and keep in mouth for as long as comfortable (around 5 mins) (about 30% gets into your system).
    acetyl_L-carnitine 500mg daily for two months then one every two days thereafter
    curcumin (an extract from turmeric) 2 grams twice daily for two months (avoid if it upsets your stomach but considering retrying later when you have improved a little.)
    creatine 1 gram daily
    glycine 250 mg at dinner than 250 mg one hour before bed (this is a good aid for sleep)
    multivite with at least 100mg vitamin C and preferably containing selenium and molybdenum

    There are other minerals worth considering, potassium and iodine in particular.

    I have not explained the function of each of these but I can if you wish. You can also just search on PH for inormation or just google them with ME/CFS after the term eg {coenzyme Q10 ME?CFS}

    The purpose of the above nutritional program is to improve your mitochondrial function and to reduce low grade inflammation. It is quite a lot to take but is safe. If you feel you are reacting badly to something then cut back to the first five items only. Except for the glycine take all early in the day.

    Cut out as much sugar from your diet as possible and eat lean.
    Ensure plenty of hydration during the day.
    Rest/relax deliberately and avoid all activities before going to bed. If you are experiencing pain while lying in bed it is usually best to get up, walk around ie do some moving then return to bed. Don't fight to stay asleep. If you are experienced at meditation then you could meditate when you get up during the night.

    After taking the above for two months begin a gentle exercise program to increase your flexibility. Exercise is very important in FM and in ME/CFS but must be done with great care.