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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by Sabina on September 21, 2003, at 1:20:28
i've been doing the greatest thing lately, and i wanted to mention it in case it might be of interest to anyone else: deep water exercise. it's absolutely brilliant. i've had a lot of trouble finding an activity that suited my needs (pain from fibromyalgia) and that i could stick with over the long haul without becoming bored and/or discouraged.
i hate aerobics classes: "and one, and two, and, don't forget to breathe, and..." the treadmill is just that...a flippin' treadmill. i always feel like a hamster when i'm on it. forget that elliptical torture device and all; low impact or not. anyway, they're both in a room full of sweaty, grunting...overexerters. they make me feel nervous and inadequate. if i hate doing it then it's going to be nearly impossible to make myself do it.
i mean, i'm already dealing with near constant pain, insomnia, bipolar disorder, under-employment, trying to run a household, and stay in a relationship, among other things. i followed some advice (from here, thank you very much) saying that one way to fight depression was to find an activity that you enjoyed as a child and try it again. i applied that logic to my inability to find a good fitness solution and came up with...water.
i used to *beg* my mother to drive me to the pool every day in the summertime when i was a child. my fingers were always shriveled up and my sandwiches were always slightly soggy. i *lived* at the pool from the ages of 3-12, when my family moved into the middle of the country. it was then that i became socially isolated, hit puberty, changed my sun into a moon and became a woodsy, gothic sort of girl instead. i was also a very nervous and depressed girl with no more pool!
now that i've returned to my first love, as it were, i feel i have a chance of actually becoming as fit as i want/need to be, even with the fibromyalgia. i was *really* nervous at first about feeling like a walking grape in my purple swimsuit, when, in fact, it wasn't an issue at all. it's mostly senior citizens and morbidly obese folks, as it's the only exercise they can do safely.
of course, using the nautilus machines in the big, hip-hop noisy, mirrored room full of 20 year old hard bodies is a different issue altogether! there, i just keep my head down, get in my reps, and then escape to...the pool. that's the crafty little deal i made with myself: you can only swim after you use the machines.
below is a link to a recent article i found that explains the myriad benefits of water exercise much better than i can. you don't even have to be able to swim to do it, and it is so incredibly relaxing! even though i can swim, i choose to wear a foam "belt" that gives me a bit of extra buoyancy; but is mostly used to help keep my posture correct as i exercise/play. i also use the foam "barbells" that are provided by my gym and i've bought some foam "shoes" to strap on my feet to provide extra resistance with every movement. i look sooooo un-sexy when i suit up, but i still feel graceful in the water. anyway, these resistance tools qualify water exercise as "weight bearing" and will help fight osteoporosis, which runs in my family of small framed, pale, white women. i do all sorts of modified yoga and pilates moves, too.
i go almost every day and the time just flies by. i find myself more relaxed than i would normally be, even hours later; but without the terrible joint pain that came with overexertion on the treadmill. whenever i feel like i don't really want to be bothered to get my gear together and drive over there, i think about all the times i begged my mother to please, please, take me to the pool. that's when i say to that little girl: okay, let's go!
http://www.azcentral.com/health/fitness/articles/0811water-CP.html
Posted by octopusprime on September 21, 2003, at 6:45:08
In reply to something positive from here (long-ish), posted by Sabina on September 21, 2003, at 1:20:28
sabina, good for you!
i love the pool, and i just started doing lengths again this summer. i swam outdoors (to get sun and exercise), and i felt fantastic. once the fall hours start at the indoor pool (the 9 pm swim is at the perfect time for me, i'm typically bored if i'm by myself at that time), i hope to be in the pool again.
you're right, it is relaxing. plus many pool complexes have the added treat of a sauna and/or hot pool for after your exercises!
if you live in a moderately large city, may i suggest changing the pools you attend every once in a while. a change in instructors can liven up the class. (and also keep your newly-trained muscles from becoming complacent)
(i used to lifeguard, and the same music played week after week after week started to grate a bit ... your mileage may vary)
congratulations on finding an activity that suits you.
Posted by fallsfall on September 21, 2003, at 8:19:59
In reply to something positive from here (long-ish), posted by Sabina on September 21, 2003, at 1:20:28
Sabina,
It is so wonderful that you could find an activity that you love that is also good for you. It really is easier to go if it is something you enjoy.
You are an inspiration to us all!
Posted by BarbaraCat on October 2, 2003, at 12:04:19
In reply to something positive from here (long-ish), posted by Sabina on September 21, 2003, at 1:20:28
Hi Sabina,
Took your cue to move over here so we can chat freely. I have some fibro comparison quesitons for you. I so rarely talk to anyone who has so many similar conditions as I do. I'm presently going through a semi-awful flare, mainly in my muscles. Thank God for lithium and lamictal. I haven't had a black hole depression since taking them, which used to get even worse during a flare. No fun feeling like a truck ran over the body and the emotions.My question to you regards muscle cramps. Do you ever get cramping tooth-ache like pains where it feels like there are little muscle pops migrating around? I can actually see the muscle fibres popping and contracting under my skin primarily in my calves, outer legs and shins. In my darker more psychotic times I got to feeling like something out of the X-Files has invaded me. I take loads of magnesium and calcium and so don't think this is the problem, and I know I'm absorbing them because my bowels tell me so. My doctor and naturopath don't have a clue except to suggest restless leg syndrome, but I don't think that's it. I wonder about potassium but don't want to mess with it because of the delicate sodium/potassium balance that's easy to disrupt.
As for the water exercise, I don't live near a pool, however, we just bought a good sized hot tub which isn't installed yet, but I can't wait. I plan to do stretching exercises in it which I otherwise hate to do with bunched up ligaments. The other exercise I find helpful and convenient is a rebounder trampoline. I have a very good one, NOT the el cheapo models from sports stores. It's right in the living room so I can't ignore it. Bouncing gently and then more vigorously stimulates the lymphatic system and moves wastes out of cells throughout all organs, tones skin, plus it's fun. So, hope you're doing well these days and the 'Victorian Vapors' have taken a hike. - BarbaraCat
Posted by kara lynne on October 2, 2003, at 19:08:45
In reply to Fibro stuff » Sabina, posted by BarbaraCat on October 2, 2003, at 12:04:19
Hi BC
Can you tell me what kind of tramp to look for? I suffer from the fibro stuff too, and I have been meaning to look into getting a mini trampoline for awhile now. Thanks.
Kara
Posted by BarbaraCat on October 3, 2003, at 0:16:45
In reply to Re: Fibro stuff, posted by kara lynne on October 2, 2003, at 19:08:45
Yes, I have the Rebound Air brand made by Al Carter, the proponent of rebound technology. The website is www.reboundair.com. The first one is retail price which is around $250. Thereafter you qualify as a distributor and can order subsequent ones for about $100 off retail price. They're very high quality rebounders and worth every penny. I've had mine for around 10 years, left it outside in crummy weather for 5 years, and it still works great. It's the most efficient and convenient exercise you can do and why I don't get on it and bounce every day is beyond me. - Barbara
Posted by kara lynne on October 4, 2003, at 12:03:25
In reply to Re: Fibro stuff » kara lynne, posted by BarbaraCat on October 3, 2003, at 0:16:45
Posted by Sabina on October 6, 2003, at 1:08:11
In reply to Fibro stuff » Sabina, posted by BarbaraCat on October 2, 2003, at 12:04:19
BarbaraCat,
Glad to see you here on the social board. I took a break from posting for a couple of daze. I wasn't able to say anything nice, so...you get the idea. No muscle pops here, tho' junky bugs in the veins are frequent. It makes me wish I hadn't read all that Burroughs as a youth. I wish I hadn't read and heard and seen a lot of things now that they seem to come back to torture me during the darkest times.
During the tooth-achy times you described, I feel like one of Francis Bacon's screaming popes (if you don't know, you don't wanna know). Sometimes, the pain is like the throbbing pain I had in my lower legs intermittently throughout my childhood. It would frequently wake me up in the middle of the night. My mother called them "growing pains" and were completely dismissed as of no importance. I remember telling the doctor, too, but nothing was ever done. I just lay awake, alone, taking aspirin to deal with it. I guess my insomnia really started before I'd even reached puberty. Even now, there are nights and days of such pain that it frightens me. I want to go wake up my husband and tell him, but I never do. There's nothing he could do about it, and I'd just feel guilty about disturbing the sleep of the person who has to get up and earn money for us! I work from home on my own schedule, though it's not nearly what I made before. I try not to think about it, and sometimes I can't really talk about it.
I have a hard time with the way Fibro is dismissed by so many people, medical or otherwise. I’d never even *heard* of it when I was diagnosed back in '97. I thought I’d just go along with a little less energy and a little more pain than the average person...until my run-in with Depo Provera. An Ob-Gyn has since told me that, as a Fibro patient, I should have never been given Depo in the first place. All I know is the resulting hormonal surge/change/dip turned my world upside down. I think that my BPII might have continued to go undiagnosed if it hadn't been for all the extra stress brought on by a chronic illness. I’ve tried it all, I tell you. I’ve been a vegan teetotaler and a fast food beer guzzler, with a full complement of expensive supplements or not even taking a daily multivitamin. I just can't tell much of a difference, unfortunately. I did feel better when I had acupuncture, but I can no longer afford it. I used to do the mini trampoline thing; but then, at one point, I lived in a *tiny* place and mine got all rusty under a leaky deck and so I abandoned it.
Right now I’m trying to stay enthusiastic about the water exercise routine...on the days when I can actually leave the house; that is, no IBS, no migraine, no excessive Xanax use due to worry/fear. I try to go every day. It's so relaxing and pleasant that it's difficult to believe it's really exercise! I’m glad to hear about your new hot tub. I’m sure that will help, especially during the colder months. I know that the gym's sauna really makes me feel better. I always seem to sleep better after coming home all uber-toasty in my joints. Right now, I’m trying to keep my painkiller intake to a minimum but it's a bit of a struggle. Change of season times are always bad for me, especially summer into fall.
I've got some other posts to make (meds issues, etc.), but let's do keep in touch on the Fibro updates. It does help to know that i'm not alone in this strange combination of life challanges (I refuse to say disease or disorder). :) Bina
Posted by BarbaraCat on October 6, 2003, at 13:52:35
In reply to Re: Fibro stuff » BarbaraCat, posted by Sabina on October 6, 2003, at 1:08:11
Posted by kara lynne on October 8, 2003, at 22:41:43
In reply to Thanks Bina, we'll keep in touch re Fibro (nm) » Sabina, posted by BarbaraCat on October 6, 2003, at 13:52:35
Are there some threads you can lead me to where you've talked about this and how you've dealt with it? I'm having a lot of problems lately. Thanks so much. K.L.
Posted by BarbaraCat on October 8, 2003, at 23:28:49
In reply to re Fibro, posted by kara lynne on October 8, 2003, at 22:41:43
I don't have any threads handy at my fingertips, but I'd be happy to talk with you about it. What would you like to know? What are your symptoms, when did it start, any ideas of how and why you've gotten it?
Have you had any specific tests done? Any hormone panels, i.e., estrogen, progesterone, testosterone, DHEA, especially thryoid? Imbalances in these contribute to fibro symptoms but who knows if they're causal or not.
I don't have any answers but have spent very much time researching it, have gone to many health providers (most totally worthless, but my present naturopath is excellent) and have come to some understanding about my own situation. But having just barely come out of a major flare, I certainly don't feel like I can speak with authority. On the other hand, who can? But I can say that the flares aren't coming as frequently, last less time and I'm more emotionally stable during (although I did break down in Costco today - oh well, Christmas stuff everywhere and my Mom died last December. So it's not just fibro flare). I can also point you to some websites I've found helpful. So ask away. - Barbara
> Are there some threads you can lead me to where you've talked about this and how you've dealt with it? I'm having a lot of problems lately. Thanks so much. K.L.
Posted by Sabina on October 9, 2003, at 0:13:59
In reply to re Fibro, posted by kara lynne on October 8, 2003, at 22:41:43
you can read my previous post in this thread for my general background with these issues. the pool is the only thing that has really been helpful. other than that, i just try to be much more aware of my activity level. if i overdo it, i pay for it dearly. i hope these links help you.
http://www.fibromyalgiasupport.com/
http://www.efibro.com/index.php
http://www.fms-help.com/tips.htm
http://www.cfs-news.org/faq.htm
Posted by BarbaraCat on October 9, 2003, at 0:48:24
In reply to Re: links for fibromyalgia ( related conditions), posted by Sabina on October 9, 2003, at 0:13:59
Posted by kara lynne on October 9, 2003, at 1:12:48
In reply to Re: re Fibro » kara lynne, posted by BarbaraCat on October 8, 2003, at 23:28:49
Oh barbara,
I'm sorry to hear about your mother; that's got to be a hard one to be coming up on. Not to mention anyone could have a breakdown in Costco to begin with!I've been to a rheumatologist and a few other doctors. I have varied, vague diagnoses and 'symptom pictures' (some positive tests for lupus, but not all of them) and pretty constant signs of inflammation. I pretty much hurt all of the time in one form or another, and the conditions are inter-related (immunity attacking itself?).
Part of what's got me upset is that my psychiatrist has been treating me for dual diagnosis conditions and now my insurance wants to know why he's treating me with one med that they don't want to pay for. So I may stop it altogether or have to go consult with other doctors and get it all done differently. My doctor could have made it a lot easier on me but he prefers to drop the ball when stressed.
I hate to go on about all the symptoms you know? I feel like an old fuddy duddy. But the truth is I've struggled a lot, I can't take most antidepressants due to ulcerative colitis (ad's exacerbates it--except for tricyclics which give me tachycardia) so I have to have that treated first. And secondary arthritis is common due to colitis (as well as lupus). But as I said, now they've come down on my doctor for treating some of my other conditions and he wouldn't explain to them why we did it.
Ok, I went a little astray there. Someone mentioned a pain clinic to me today that I might check out. It's either that or stop taking anything for anything, be in constant pain and go to N.A.
I'm going to go to OyV. A.
Of course I realize there are other treatments; I even have an old article sitting right in front of me my mother sent me about a new drug coming out for fibro. I'll let you know..
What is a major flare like for you? (if you want to say--if not I completely understand).
Again, I'm sorry about your mom.
(((Barbara Cat)))
Posted by kara lynne on October 9, 2003, at 1:14:18
In reply to Re: links for fibromyalgia ( related conditions), posted by Sabina on October 9, 2003, at 0:13:59
Posted by BarbaraCat on October 9, 2003, at 13:06:30
In reply to Re: re Fibro/ Barbara Cat, posted by kara lynne on October 9, 2003, at 1:12:48
Hi Kara,
Fibro symptoms: Hopefully this very long post will help you compare your symptoms to mine and open up a dialog between us. We fibro folks (and I'm assuming you have a mood disorder as well) are rare on this board and supporting each other will help us all. First of all, fibro vs. lupus. I wondered about lupus for myself since the symptoms are somewhat similar. I've been tested for lupus antibodies which were negative. You might want to do some web researching about this, the possibility of other conditions skewing your results and the many treatments possible. But Fibro is not lupus and the pathology is not the same, at least from what we know at this point. Fibro does not seem to be an autoimmune condition as is lupus, however, there is some talk of a possible inflammatory cytokine disorder. I'm not sure about this, but I believe that the flares of fibro are more intense and painful than lupus but are cyclical, whereas lupus is more of a constant chronic condition. I sure hope your tests are 'false positive' in this.The worst of the flares are cyclical with relatively good days between. I can't get out of bed during a flare, the longest was 3 weeks. I'm rather compulsive about daily showers so going 3-4 days without was torture in itself. My pain is like a dull gnawing deep pain in the muscles, mainly in the ligaments and only rarely in a joint. It moves around but stays in the same general area although I can get random pains in a brand new spot. I get alot of pain in my upper back and the outside of my lower leg and foot, mostly on the right side. This mainly right side pain is contrary to the standard criteria for fibro where those famous 18 trigger points HAVE to be bilateral. Not for me, although I will get an occasional left side pain. Also, I've had the standard back pains, sometimes severe, but fibro pain has a very different quality. Nothing helps the pain although I take alot of oxycodone and vicodin during these spells which don't really take away the pain as much as causing me not to care so much about it.
I've tried the usual pain meds, small doses of tricyclics at night (I was on nortriptyline for an exacerbation in depression for 3 months. It helped with the depression but not fibro). Sometimes Neurontin helps but not as consistently as it's been touted. Sometimes ibuprofen helps. It all depends on the flavor of the pain which changes from day to day. But nothing really helps. When I'm in for a bad flare I just have to live with it and take to bed. Oh, massage helps and so does heat - my heating pad is my good friend. We're getting a jacuzzi spa installed this week and I think it will help alot. I'll be able to do stretches in it which I can't will myself to do otherwise. The more out of condition I get the harder and more painful it is to get back in.
I also have alot of stiffness and periodic clumsiness because my hands can't hold things as well. This has taken it's toll on my piano playing and caused me to put away my flute for good. The stiffness is the worst in the morning. It takes me about 1 hour to loosen up and I shuffle about like I'm 90 years old. I really hope this improves otherwise I can't imagine what 90 years old will really be like.
I was quite active before this hit about 5 years ago, and then I was down. Had to stop working in the high tech field which was murder on me 2 years ago and finally finally two months ago was awarded disability benefits.
Even though I'm always in pain and stiffness to some degree, I try to take advantage of the good times and get as much exercise as possible without 'trying to make too much hay while the sun is shining' and overdoing it. I'm a belly dancer and love it love it love it, so that's what I do when I can. Also, I have a very good rebounder mini-trampoline which helps move the lymph and is something I can easily do, even if for a few minutes.
Along with the pain, I get extremely fatigued, like a toxic waste kind of exhaustion. Sometimes I can sleep with large doses of benzos, ambien, anything that will knock me out. But more likely I have insomnia along with the fatigue. And lack of Stage IV sleep is the single biggest contributor to fibro. When I say large doses of meds, I mean large doses. The usual doses when I'm relatively well don't do a thing for me during these times, like all my circuits are blown.
I used to also get horrendous bleak and despairing depressions, as if things weren't bad enough. Part of it was lying there thinking I'd never get better, what about money, what about survival, what about a life? I'm lucky to have a compassionate husband who is patient and supportive, but he's been out of work as well. The economy in my neck of the woods is abysmal and we're living off of rapidly dwindling savings and my disability. So money has contributed to major stress, and as we know, unrelenting stress can kill even if you don't have a chronic illness. In fact, unrelenting stress for much of my life is probably the reason I've come down with this. It's been a good circuit breaker and strict teacher, that's for sure.
Thank God, these hellish agitated depressions have ended since my unipolar major depression has been re-evaluated as bipolar disorder. Since being on lithium and lamictal I still get depressed but they're short lived and nothing, nothing, nothing like the nightmares of the past which were becoming a constant in my life and not just during a flare. I'm in wonder that I survived them. So I can lay there in pain during a flare, but have hope that this too shall pass. I don't obsess quite as much on the certainty that I'll be a bag lady and won't be able to take those daily showers either!
I also get irritable bowel syndrome. For a while it was alternating with blow outs and then constipation. Now it's just constipation, for which I'm grateful I guess. I take a product called Fiberzon from Amazon Herb Company. It's mainly a psyllium product, but has other rainforest herbs. It helps better than any other for me.
Last, I'm seeing a wonderful naturopath after going to about 10 health practitioners of one sort or another. My PCP doctor is a nice guy but all he can do is say 'well, there's nothing that can be done'. He's probably right - exercise and pain meds are about all anyone can offer, but jeez, a little more investigation into my body chemistry would be nice.
In contrast, using saliva and blood tests through my naturopath have shown major hormonal imbalances of the sex hormones and thyroid (which I was aware of before). I was also practically zero on Human Growth Hormone, which is produced in Stage IV sleep and contributes to muscle repair, strength, anti-aging, mood. A pivotal study at OHSU in Portland, OR found that low HGH is a major player in fibro. So, I'm injecting myself with Human Growth Hormone. So far I haven't noticed much of anything, but I'm on a very conservative dose and it takes at least 6-9 months before the benefits kick in, which are considerable. Getting my hormones working right is probably the most crucial element in my recovery right now and I'm hopeful that, if not cured, my quality of life will improve significantly.
The other implicator is 3 to 6 times the normal amount of Substance P in the spinal fluid. This enzyme is responsible to transmitting pain signals to the brain and too much of it makes the brain ultra sensitive to pain. Basically, this means that the pain is not really in the muscles or anything place, but resides in the brain misinterpreting pain. There are substances being developed for blocking Substance P but who knows how safe they'll be. You've most certainly heard of this theory and I'm probably preaching to the choir. I haven't been tested on Substance P and don't know of anyone personally who has.
Thanks for your condolences about my Mom. I miss her alot. Like any Moms, sometimes there was butting of heads and other annoyances, but all these things seem so inconsequential now. I take consolation in the fact that it was her choice. She was hit by a car and one mishap after another contributed to her death, but she had been saying forever that she didn't want to live past 85 even though she was healthy as a horse. And of course, she was 85! I find that amazing and validating that most of us go when we're good and ready. Some don't but I trust that I will so not to worry about it before then.
One lovely thing is that I've had many visits from her, very powerful and unmistakably real. I know she's doing great and she's with me and loves me, perhaps stronger and more pure now. I feel her much of the time (I didn't at all for a few months after she passed but she was most likely a very busy gal). But it's still sad that I can't physically hug her or call her on the phone and hang out with her and there's just no getting around it. So keep in touch Kara and blessings to you. - BarbaraCat
Posted by kara lynne on October 9, 2003, at 14:16:22
In reply to Re: re Fibro » kara lynne, posted by BarbaraCat on October 9, 2003, at 13:06:30
Wow. I haven't even finished the post, but I had to respond. I feel like I'm reading my diary when you describe the physical pain as well as the fear it brings up about survival issues. I also tested positive for those trigger points--although that criteria seemed a little arbitrary to me. I don't think my doctor believed that I was sore in as many of them as I really was. That's the other part of this--I don't tell anyone because it sounds so flaky. My (ex!) boyfriend started to catch on when one day I told him he was holding my hand too hard. I don't think he actually was but I was in so much pain that day I could barely stand it. He brought me some info on guafein...(however you say that ingredient in cough syrup) that had worked for someone else he knew.
-My pain is like a dull gnawing deep pain in the muscles-
This is it exactly, but I also feel it deeply in my bones, almost from the inside out. I know that is also not typical of fibro.
-Along with the pain, I get extremely fatigued, like a toxic waste kind of exhaustion-
!!!!! If I could jump out of the computer wildly nodding my head I would.
-I also have alot of stiffness and periodic clumsiness because my hands can't hold things as well-
I had an MRI because I was complaining about dropping things all the time. The doctor wanted to rule out MS--which he did.That's pretty amazing about your mom. Both that she chose her timing and that you've had those visits. I have very conflicted relationships with my parents; I've always worried about how I'll cope when they die. And they're both getting on--I see it more with each visit.
Thanks again Barbara, I'm going to write more later.
Oh: The positive ANA test. I've been tested and re-tested, but my doctor has told me people can test positive for it and not have lupus. It may also be a result of the colitis.
Posted by Sabina on October 9, 2003, at 21:22:22
In reply to Re: re Fibro » kara lynne, posted by BarbaraCat on October 9, 2003, at 13:06:30
This is the end of the thread.
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