All these meds and some relief

Discussion in 'Fibromyalgia Main Forum' started by tomkat, Jun 23, 2003.

  1. tomkat

    tomkat New Member

    Hi to All,
    I have been dxed with fibro since 1988,had a brown recluse
    spider bite me in 1991,and almost lost my lft leg.It seems
    that after that my health took a downturn.I kept getting
    pleursy,(even tho I had quit smoking)and was getting
    pneumonia at least 3-4 times a year,with bronchitis,and
    severe sinuitis thrown in between.I received the pneumonia
    shot,and that problem was solved,but continue to get
    bronchitis,on a regular basis,and severe sinuitis infection
    plus thrush in my throat real bad.
    My question is,is anyone else experiencing this sort of
    thing plus the everyday pain.Even though I'm taking
    ms-contin 30mgs 3 times a day,I still have to take some
    Lorcet 10-650mg for breakthrough pain.I also take from 2-4
    Zanaflex 4mg at night,klonopin 2,plus baclofen 3 times a
    day.I also take mobic,and lexapro in the a.m.Is anyone else
    having this much pain? Grant you it's not that bad every
    day,but if I exert myself for a day or 2 I'm like this some
    times for 2 weeks.I'm fatigued all the time,and try to walk
    as much as I can .I also sat in a chair 2 yrs ago which
    colapsed to the cement,which bulged out 2 disc,and did some
    damage to the sacroiliac.I walk with a cane mostly to keep
    from falling,but some days need it for support,because of
    the lft leg from the bite,and also the sacro thing.Thanks
    if anybody can relate to me.Take care,God Bless,Tommy
  2. Shirl

    Shirl New Member

    Gee, you sound like me a few years ago. The FM started after a bout with pneumonia, then I was diagnosed with pleurisy, then I started with the bronchitis. I think till this day (this was 20 years ago), that the 'pleurisy' diagnosis was not pleurisy, but Fibro. The pain is similar, and all in my upper back, and chest pain.

    Strangly, I was also bit over 20 times on my right arm by a spider, it was on a plant I bought from Asia. I don't think it was a recluse, as I would probably be dead from what I hear about them.
    I was sick from Sept.2002 to Jan.2003 from the spider bit. Apple Cider vinegar cured the bits and the poison in my body (a lady on the board here told me about the vinegar, her husband was bit on the leg by a Recluse). I was never so sick in my whole life!

    I have not had a problem lately with the pneumonia or the bronchitis too often anymore. Plus I have the FM under control too. I just had a flare, but it only lasted for about four days instead of weeks or months like before.

    Yes, the pain is excruciating. The only thing I can compare FM pain too, is an absessed tooth, the spasms are horrific too!

    The only med I am taking is a low dose of Xanax once a day for racing brain syndrome.

    I cannot take pain meds, etc. I am allegic to almost all of them, and I also have IBS.
    I take supplements, vitamines, minerals, herbs etc. and a whole lot of off the wall remedies for everything that goes with FM.

    What helped me the most was 'Pro Energy' (malic acid and magnesium) and ZMA (zinc, magnesium, and vitamin B-6).
    These two eliminated the spasms, lot of the pain, and I am now sleeping very well.

    Also, a big part of this with the sinuses, allergies, bronchitis, etc. was drinking half my body weight in OUNCES of water a day.

    There is a book called; ABC of Asthama, Allergies, and Lupus' by F. Batmanghelidj MD. Well worth the read. I have been so much better since I started drinking water! Sounds crazy, but its very true.

    My husband works off-shore, he is a Chief Engineer on a Barge for a company that lay pipe for the oil companies. We are in Ponchatoula, Louisiana (originally from New Orleans). Not a whole lot far from you (I read your profile :)

    Does the heat and humidity bother you here? I live mostly indoors when it gets this bad. Keep the a/c down to 69-70. Can't handle the heat at all.

    Take care, and I do hope you get to be feeling good soon.

    Shalom, Shirl

  3. tomkat

    tomkat New Member

    Hi Shirl,
    No you're not very far if you go by how the crow
    Believe me I drink at least a gallon of water a day I'm not
    joking.My sister-in-law gave me 1 of those big glasses you
    can get at a gas station,with the LSU football schedule on
    it,and keep it by me all day.I drink at least 6-8 of them
    a day.If I'm outside at all I drink even more.No I can't
    stand the heat,humidity it just wears me down.Now in the
    winter those cold,humid,rainy days keep me in constant pain
    You have had that much relief since taking those
    supplements?I take a regular multivitamin,plus magnesium,
    glucosamine,bee-pollen,b-12 and I still have no energy.We
    have a little gift shop I watch,and we try and do at least
    1-2 festivals,or flea markets a month to help with the
    bills.In fact we are going to Alexandria for the Uncle Sam
    Jam the 3rd thru the 6th.They say that they expect 80,000
    people,and vendors like us usually sell out of merchandise
    or close to it.I hope so we could sure use the money.I wish
    you could e-mail me direct cause I would like to know more
    of what you do to control the pain.It seems a lot better
    then what I'm doing rt now.Of course as we all know not
    every thing works for everyone that works for 1.Well take
    care and nice meeting you.
    AU revoir mon bon ami,Tommy
  4. Shirl

    Shirl New Member

    Tommy, I will send you all that I take (don't duck!). Its a lot of supplements...........

    Be looking for the email, will put 'Shirl' in the message area so that you know its me.

    Shalom, Shirl

  5. catgal

    catgal New Member

    Hi Tommy~~Your post touched me deeply, and I could certainly relate to what you are going through. I am 54, was born with severe asthma/allergies & IBS; have had FM/CFS since my teens; as I got older I developed osteoarthritis, psoriatic arthritis, rheumatoid arthritis, and three years ago was diagnosed with degenerative disc disease (DDD).

    Your chronic respiratory problems sound like asthma/and or severe allergies or both to me because I have the same problems you described. Medically, I am in that rare category of asthmatics classified with "life-threatening asthma". Without realizing it, the OXYGEN LEVEL in your body can drop critically low for any or no reason. When this happens, your body is not getting enough oxygen to sustain it effectively. When this happens to me, I feel extremely weak (more than just CFS), dizzy, headachy, often blurried vision, takes a huge effort to get around, shower, or move muscles, my chest is heavily congested/tight, bronchitis worse, unproductive cough, sinus infection so bad I can't stand to wear my glasses, and sometimes feel faint. This can be an extremely dangerous condition. The last time this happened to me and not being able to think clearly and realize what was happening to me (again)--I thought I was just feeling bad from all my usual ailments. Not realizing that my body & brain were not getting enough oxygen, I took a shower thinking that might make me feel better. I hadn't been in the shower but a few minutes when just the minor exertion of trying to shampoo my hair lowered my already low oxygen level to the point that I passed out, hit my head on the side of the bathtub, and had it not been for my dog licking my face and pawing at my head waking me up--I would have died. I ended up in the hospital for a week receiving IV antibiotics, Zyertec-D, Quaifenisen, nebulizer treatments every two hours, and of course my regular meds for my back pain, etc.

    I can not encourage you strongly enough to have your physician refer you to a Respiratory Specialist. Plus, did you know that some poisonious bites can damage your respiratory system and severely weaken your immune system?

    Along with my asthma, my allergies to certain things are lethal. Any kind of bee sting or spider bite stops my breathing and paralizes my respiratory system. I have to carry a respiratory kit with me at all times.

    On a daily basis for my respiratory problems, I take Zyertec-D 2x's a day; 2 squirts of Flonase 2x's a day; 2 puffs off a Combivent/Albuterol inhaler 2x's a day or as needed; 2 Guafenisen tablets 2x's a day to keep the congestion thinned, and I have a nebulizer machine at home and have to give myself a treatment 2x's a day to keep my oxygen level up.

    It doesn't sound as though you have "life-threatening" asthma as I do, but you certainly have a serious, chronic respiratory problem(s) that needs to be diagnosed and treated by a Respiratory Specialist or Asthma/Allergy Specialist. These chronic infections you get (just like me) can do serious damage to your lungs and entire respiratory system.

    We can ache, hurt, and be in pain all day from FM, back problems, arthritis, and other such ailments, and while they are uncomfortable and make life miserable--they are not fatal. But, breathing is crucial and nothing to mess around with. My oxygen level can drop in a heartbeat for no apparent reason sometimes, but usually because I have chronic bronchitis, plurisy, & sinus infections that go on too long, become worse without my realizing it {because I feel so bad to start with}, and then without realizing it--my oxygen level plummets. A Low oxygen level can make you feel like you are in an FM flare or just real sick without realizing what the problem really is. And that can be a fatal mistake.

    And it can take a while for physicians to pick this up because you have to be having a low oxygen spell at the time you are in the physician's office (or recognize it at home and go directly to your physician's office)--and then they have to put the oxygen clip on your finger to read your oxygen level. That is the only way they can identify it.

    Since I have been with my physician a long time, he knows all my medical history--so everytime I see him even for a general or med-refill appt--he always checks my oxygen level. And, since I am classified with "life-threatening" asthma--my chart is *flagged* and anytime I call saying I'm having trouble with my asthma or breathing--I am immediately seen as soon as I arrive no matter how booked he is.

    And, out of all my ailments, my physician and Respiratory Specialist tell me that it is my chronic, severe respiratory problems that would probably get me disability without much hassle. You have to be able to breathe to work!

    My FM/CFS makes life hard on me. The Rheumatoid Arthritis is extremely painful and debiliating in my hands, neck/shoulder area. And the degenerative disc disease in my back with several discs completely degenerated, herniated discs, bulging discs, shattered vertebrae, neck/spine nerve damage, and other multiple back/neck problems cause me a great deal of pain, discomfort, and misery. Yet, I am my sole financial support and work three days a week--which is becoming more & more difficult. For these problems, I take 20mgs oxycontin 3x's a day; 10mg percocet 3x's a day or as needed; soma (a powerful muscle relaxer) 3x's a day; 20mgs Bextra (anti-inflammatory) 2x's a day, and 1mg klonopin at night plus a fourth to a half klonopin mid-morning and mid-afternoon. These meds help considerably with the pain, but does not eliminate it--especially on the days that I work. After my 3 days of work (Tuesday through Thursday), I am bedridden till Sunday. When one thing flares up--they all flare up, and there is nothing I can do but rest, medicate, and ride it out.

    I am sorry you are having such a difficult time. Like I said earlier in this novel--I can truly relate to your medical problems and how you feel. I've been a psychotherapist for 30 years, and I wish I possessed a Magic Wand to cure us all. But, I have found "Magic" in just being able to breathe or get out of bed. I appreciate that there are pain meds that ease our suffering. I'm grateful for what I have learned in the process of having to deal with these maladies. Each day is a Gift even on my worst days. To breathe in the fresh Mountain air and feel the sun warm on my face is a Holy Moment. My Blue and Down Days are Times for Reflection. And when I laugh--what an amazing experience that is.

    I apologize for this being so long, but your post touched me, and I felt deeply for what you are going through. whatever you need to do to see a Respiratory Specialist and get GOOD medical care for your respiratory system. For if you can can handle the rest. Blessings and Best Wishes to YOU. Carol....
  6. tomkat

    tomkat New Member

    Hi Carol,
    Thank you for your kind,and informing post.I will surely
    get this checked out.I will certainly keep you in my prayer
    if you don't mind.I hope you the best,and hope something
    will come along to help you along the road of life.Take
    care,and God Bless,All My Best,Tommy
    [This Message was Edited on 06/23/2003]