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  • Hormonal connection? Meds & exercise key

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    Old 07-12-2002, 09:21 AM   #1
    HopeFloats
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    Wink Hormonal connection? Meds & exercise key

    I'm a 27-year-old whose fibro seemed to have been triggered by a viral attack last September. Like many of you, all my blood tests came back normal. I strongly believe a hormonal connection exists somewhere (one perpetuating factor in addition to others). I suspect this cause I've noticed I don't get symptoms during my period (although I get PMS). About a week -after- my period ends, I suddenly feel very weak and tired, get a strange pain all over, especially in my extremities, fine tremors in my hands, balance problems and systemic-like symptoms like dry skin and eye pain, and basically, a tremendously hypersensitive nervous system (does anyone get a shock when a phone rings, like feel your heart jump a mile and stop in mid air?). I thought I had cortisol deficiency, and wondered if some hormonal regulation was in order, but my rheumatologist told me he didn't want to disturb the hormonal cycle. I'm actually quite keen to know if any of you have doctors who have tried some kind of hormonal treatment which works? I think fibro as a legitimate disorder is not well recognised where I live in Singapore, so the docs stick with safe treatment (not that many can diagnose it in the first place . I find this bulletin board a godsend, cause reading all your wonderful posts, I feel as though I'm not the only one with the condition!

    Another thing I want to say is exercise works very well to alleviate some of the troublesome symptoms, at least for me. The problems I faced initially were 1) you're in numbing pain - exercise? Got to be kidding! Can't walk to the kitchen from the bedroom without some feet protection in the form of bedroom slippers!! Bumping into the kitchen door due to balance problems certainly makes things worse! All you can say is "Ouch, ouch, ouch!!" 2) you feel weak and tired… no energy to move around… exercise is the last thing you want to do… the bed beckons, hey, in fact, you're still in it… getting up is not going to be an option today!!!

    Or, is it?? Well, here's where medication comes in. (And I am a strong advocate of this as it is the first step to treatment that can actually work, I've discovered.) I take Vioxx (one 25mg pill in the morning). It seems to work, at least in combination with exercise, though not all the time. But there's some help. For sleep, I was given amitriptyline (Elavil), which wreaked havoc for me… awakened me multiple times in the night, made me super drowsy, confused and forgetful in the daytime, and made me fat in four days (but I think I'm just one of the odd ones). I had to stop. But because Vioxx made some of the pain go away, I cld begin to condition myself into some form of exercise. I must say following exercise videos work for me (it's guided, you work out a variety of muscles, and you do different things all the time). Still, to avoid tedium, I alternate this with swimming. I think the thing they say about exercise releasing endorphins, the body's natural painkillers, is true. Even when feeling pain, after I exercise (while my body's "on fire"), I usually feel better. The thing is, you have to psyche yourself to start and stick to a routine. You will definitely find some benefits. Even if it doesn't at first make your pain go away, it does restore strength, stamina, and most importantly, VITALITY, something we thought died in us. At the same time, if medication can take care of at least some of the pain, I think you will encounter an improved quality of life. I think medication and exercise go hand in hand. It took me 10 months to get someone to prescribe me pain medication. Before that, I was so ignorant, I just grinned and bore - and of course, got ****** when one of the doctors asked me to exercise more. How to exercise when you feel like dying? So, if your doc doesn't believe in fibro, and your tests all come back normal, demand pain medication, and with some discipline to get your muscles moving, I think you will begin to feel much better. Trust me! I'm relatively new to exercise, but am seeing the benefits and hoping they remain. In fact, I ran 2.4 km today (took part in a fun race), and am paying for it now (troublesome knees!), but at least, I feel revitalised, and almost raring to go… I want all of you to get better, so try this, and see how it works for you. Gd luck and may we all beat fibro together!!

     
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    Old 07-12-2002, 10:44 AM   #2
    Raven
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    Hi HopeFloats,
    I wish I could excerise. I've tried, in fact I try a lot but it just causes more spasms. Doctor took me out of PT also because it caused more problems/pain. Yet I do agree that exersise is a good thing and should help. I guess I just need to find the right meds and the right type of exercise. Swimming sounds like the best for me yet I do not have the money to pay to swim too often to benefit me.
    As for your question about homones ect. I feel there is a connection too. Where it is a cause or causes problem with the homones I do not know. I do not have a period anymore but all the yucking symptoms associated with them. The Doctors do not think I am in Menopause and of course I am not pregnant so I believe Fibro causes problems homorally(sp) or vise a versa. I am still learning. I have a lot of different conditions with my fibro too so one may also be a cause. I have FMS, MPS, CFS, CT,Migraines, Disk problems, ect. I am always reading and checking out different sites too. I go to a Fibro support group and my Rheumotoligist is very good and understanding. Yet I have no family support and I am depressed. I hope someone here can add their thoughts. Take care and Welcome! Raven

     
    Old 07-13-2002, 08:54 AM   #3
    HopeFloats
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    Hi Raven

    I'm sorry to hear that exercise can aggravate your condition. Fibromyalgia is a really strange disorder. Apart from the pain and weakness, and all, there are many individual variations in symptoms. No wonder it is so little understood! People tell me not to read myself crazy on the net (we all want to find out what we're dealing with) and I hv to tell them "hey, this isn't something clear-cut at all". There are so many routes to effective treatment, and a variety of triggers and causes tt cld determine treatment responses. Hence, the learning we have to do, and the self-discoveries (often painfully protracted) we hv to make! http://www.healthboards.com/ubb/dizzy.gif The understanding we hope to get is very impt to us, and it's enough for us to know we're trying our best to deal with the problem, which often includes getting competent medical help.

    I am delighted to hear your rheumatologist is very understanding (mine didn't even want to give my condition a name, but suggested it, though in all other aspects, he's nice). I'm sorry to hear though that you hv trouble getting family support. Hv you shown them readings taken from credible websites? Maybe you should bring them along when you visit the rheumy and support group? I guess it takes time. I'm not sure how long you've had fibro. Initially I had to face a lot of doubt too at home, even from my husband, but after I showed them readings and after the doctor actually started treating me, they realised I wasn't exaggerating. (Also, there -is- some physical evidence, like when I hv flares, my hands go red and i can't use my spoon/fork, cause it dents my fingers and causes pain - you can see the marks left on the fingers.) You still get people once in a while saying "You sure not psychosomatic?". We hv to understand from their point of view, it's easy to disbelieve. Don't be disheartened. Find strength in the things you can still do, and know it cld be worse - and keep up your mild exercise to feel better and prove to yourself and even others you can beat this! And even if you can't completely, you did put in the effort! And you yourself, inside, will be proud of that, and sometimes, I think, positive thinking can help us healthwise in ways we don't yet understand.

    By the way, some days, I feel really "ablaze" and get all depressed. Once, I just lay in a couch. Sitting so still, the pain/discomfort/weakness magnified and I felt mentally worse. The more still i sat, the more i felt it wld be a herculean effort to move. Then, I thought abt it and started moving as much as I cld, and then, after fifteen minutes of moving, I felt better. It was breaking that barrier that the disorder tries to impose on us mentally and physically. It's not like you hv to run a race. Just move, for circulation, for everything and anything tt will help, and only as much as you can w/o harming yourself, of course. And best if you can get your heart rate up, like doing a light jog on the spot or an energetic dance. Do this at least once every other day, if not everyday. Chill out and dance the pain away. Hv fun while you're at it! (Treat yourself to ice-cream later) Unfortunately, I don't think this may necessarily work for more severe cases of fibro.

    I wish you luck, and plenty of smiles. You're not alone. We are all here - all arms, all ears. I really believe in strength in numbers.



     
    Old 07-13-2002, 09:23 AM   #4
    Raven
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    Hi Hopefloats,
    Oh I am in a bad flare right now but it was so bad last night I wanted to die. I took the trash to the dump yesterday and I fixed a great dinner yet I couldn't enjoy it. I had severe muscle spasms and pain. It was terrible. My husband actually was scared for me( Or at least put on a act) I was in tears, moaning screaming. I wish I could figure out why this hit be so hard. As I type my hands are jerking. I am so tired and feel so helpless today. Thanks for the info. I will re-read your post when I am feeling better. Hugs Raven

     
    Old 07-15-2002, 08:00 AM   #5
    HopeFloats
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    Hi Raven

    Are you taking medication to address the pain? If your medication doesn't work, perhaps it's time to explore changing meds. I think there must be some way to dull/control the pain. I do notice the Vioxx doesn't always work for me, but usually, it helps at least somewhat. I had a brief "flare" today. I was greedy and had too much chocolate fudge cake during lunch. I've noticed for me that sugary and salty stuff can trigger or worsen the aches, which tend to be most severe in my hands and feet. They were burning http://www.healthboards.com/ubb/blob_fire.gif and I was ******/alarmed, so popped a Vioxx pill, which helped. Then, I managed to feel well enough to do six rounds around the running track this evening - yeah, in a desperate bid to **** off my fibro (and hopefully send it away)! I do hope you can find a pain medication that can help. Sorry to hear you were in such low spirits. Hope you are feeling better today!

    p.s. I used to get terrible "shakes", so I understand how awful muscle spasms are. Occasionally, in the past, I would get dull-arm paralysis, where my arm just wldn't want to move, and I just cldn't write (scary experience for me!). Can your doctor give you muscle relaxants? Perhaps worth a try. You may want to try a course of neurobion too (I think that's what it's called). It's a combi of vitamins B1, B6 and B12 (I think). My GP says it's vitamins specially for the nerves. I'm not sure whether eating it helped me, though.

    God bless!


     
    Old 07-15-2002, 12:22 PM   #6
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    Hi HopeFloats & Raven,

    Wonderful interchange here! HF, WELCOME! you are a beacon of much needed POSITIVE energy on this board.

    It is so easy to get ourselves sucked into the negative aspects of this dread disorder. In the beginning, for me, I really fought the doldrums, and it was hard to maintain a strong and positive force. But, time wears on and I adapted to this new life. Pain or no, I generally pretty good for a smile.

    In fact, I'm now such a clutz, crashing into things all the time, that I've developed quite the sense of humor about it all. I think I get down right silly these days, but it helps.

    I traveled my first few years with fibro med free, but other medical complications, not fibro related, have moved me to a place where I now take quite the daily coctail. I still avoid meds that are specific only to pain, but have them on hand for emergencies. I take so much other stuff that the pain meds make me feel pretty pukey.

    This minute, as OFTEN happens lately ( ), I have NO idea where I was going with any of this, what your posts said, blah, blah http://www.healthboards.com/ubb/dizzy.gif

    so, c'ya

    ------------------
    Copper
    Let Miracles Replace all Grievances

     
    Old 07-17-2002, 07:21 AM   #7
    Raven
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    Hi Copper, Thanks for writing. Hi HopeFloates. Thanks for the up lift( It does help) but then when I get back to my old routine the stress is there and the depression comes) Yes I am on meds...all kinds. I take Percocet( for Pain), Soma( For spasms), Ambien( for sleep), Trazodone( for sleep), Nexium( for stomach), Carafate(for stomach, if needed) Xanax( for anxiety, as needed). I take the pills everyday and it is getting old because I still have major flares where the pain is so bad I just want to die. I need to find a medicine that will help the pain and spasm and something to take in-between to relax the spasm. What is Vioxx for? Maybe that will help too. I never feel as good as you said where I can run around. Oh how I wish. I think I have a bad case of FMS/MPS complex. I am looking for any info on natural, vitamins, even milder drugs to help with symptoms. I want to feel somewhat normal someday. My depression has gotten really bad for me, I've been crying everyday. I will cry if I can't find something( and that happens a lot) I am going to my support group tonight so I am hoping for some info and understanding. This will be my second time. Wish me luck! I am copying some info on here to show them too. Yeah Copper, I fall alot, bump into things and stagger. I laugh sometimes about it yet sometimes it really hurts. My husband says it is the drugs yet I do this mostly in the morning when I am not on anything. But I know when I wake up and my arms are numb, my elbow hurts and my back is so bad and I can hardly get up. its the FMS/MPS Complex. I' d love to try anything to help. Thanks for writing, I'll fill everyone in on my support group meeting. Thanks, Raven

     
    Old 07-17-2002, 09:56 AM   #8
    HopeFloats
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    Hi Copper! Hi Raven! (And everyone else!)

    Copper, you're funny. Oh, about fibrofog, I can relate... in fact, I am ashamed to admit I almost killed a motorcyclist cause of that. When on a turning lane, I forgot (just couldn't hold the concentration to) to check the green arrow and turned blindly when the cars were zooming past from the opposite direction. Luckily, I hit no one, but this motorcyclist swerved to avoid me, lost control, and flipped over. I felt sooooo BAD, and kept apologising, and he said "It's okay" while hobbling cause of a hurt knee. The police didn't come, I didn't get in trouble. God was watching and forgiving, I guess. (So was the near-casualty I shall forever remember, for not scolding me when he had every right to). Anyway, I am usually a good driver with very quick responses. But fibrofog can take that away, even momentarily. And yes, we can be a danger to others at times! We must remember that when driving! For me, grammar/lexis is another sore point. Only my hubs can understand some of the things I can possibly say. Yes, I laugh about it... we do... it can be fun to sound silly... I mean, we fibrofoggers hv a gift of the (fibro) gab. We can mix up syllables and words, and show a flair for spoonerisms and all... a talent that eludes even the most gifted. Admittedly, forgetting stuff can be very frightening, and at other times, a real pain. Just the other day, I tried to leave the house four times, to no avail. First time, found I forgot the house key, second time, realised I forgot the comb, third time, realised no car key, and the last, I forget. (Yes, I wore - and took off - my evening shoes five times, and I was, of course, running late!!! But good exercise for my ankles/knees, I guess, what with tackling strappy heels and all.)

    Gee, don't we have to live with such wicked humour... such a fine line between humour and grief, no?! Anyway, practical lesson I learnt: remember to give yourself more preparation time when going out... you never know what cld hold you back (Er, Forrest Gump in fibro dumps wld say "Life is like a box of invisible chocolates; you never know what you forgot to get". Haha. .

    Raven, I'm sorry fibro is wrecking havoc on your life. I remember the crying bit. I had some bad attacks, and found my tears rolling, mostly cause I was wondering how I was ever going to discharge my work duties (at that point in time, I hd no energy, no strength... walked like an old, old lady, each step a painful accomplishment). And now I sometimes think, do I ever want to start a family? How wld I cope? I even started to think of exit options from work. But Raven, if I was in the pits, and now feel better, perhaps there's hope yet - for you, I mean! I know I can never really understand your pain, but I feel for you, nevertheless. I felt suicidal once too... I was so depressed abt having to deal with this, and I never expected the results I hv been getting with my meds (quite good) and exercise (very good). You, too, can beat this!

    Oh, to answer your qn, Vioxx is a painkiller. It's a cox-2 inhibitor. Unlike some other NSAIDs, it doesn't kill the good cox-1 inhibitor which protects your stomach and some other organs, etc. But there are documented rare side effects. You cld ask your rheumy to tell you more abt it. I hope you eventually find a pain med that works well for you. Don't give up! You hv to fight this "fibro-me-ouch-here" (geddit??). I read each patient has a unique treatment response, and therefore, treatment plans may hv to be minor experiments until the most effective cocktail is found. I was actually prescribed sleeping meds (Elavil) and muscle relaxants (Norgesic), but hv, like Copper, been trying to stay away from them, as I'm scared abt side effects and don't like the idea of popping pills. With time, effort and luck, hopefully, you'll find your elixir. Go, girl!

    p.s. Tell us abt your fibro support grp meeting - I'm really glad you're attending one, for the support and sanity you're getting. http://www.healthboards.com/ubb/gabby.gif

    p.s.s. Both you and Copper say you bump into things. Do you have balance problems? I can't go down the stairs anymore without feeling I'm gonna trip, and need to hold on to the railings... it sometimes helps to slow down to watch where my feet are going (a-rhythmic stair-climbing... hey, can we add this behaviour to the list of fibro symptoms?? Haha!). Also, can't stand still and close my eyes without feeling unsteady. Hv to hold on to something.

    Take care all, and get well soon... (yes, Copper, let miracles replace all grievances - and peace all pain too. Oh gee, I'm so wordy... always write too much. Apologies if I've made your fibro eye pain worse. )


     
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