quote:Originally posted by Tatiana: Thanks, CT. I just want some new ideas.
Now that I might be able to do!
quote:The doctors haven't been terribly helpful, but I've been able to deal with it fairly well since I discovered that anti-inflammatories fix it. It's just that now I'm running out of anti-inflammatories to take. Aspirin is still working okay, but if I lose it, i'm in trouble.
Let's hope aspirin behaves. Additionally, you can find a good summary of dietary and herbal anti-inflammatories at NCCAM's research report on Rheumatoid Arthritis and Complementary and Alternative Medicine. This covers Thunder god vine (Tripterygium wilfordii Hook F), Gamma-Linolenic Acid (GLA)(in Oil of Evening Primrose), fish oil, Valerian, Ginger, Curcumin (in tumeric), Boswellia, glucosamine sulfate, and chondroitin sulfate.
It focuses on joint inflammation, but much of the information is useful for assessing anti-inflammatories in other settings, too.
quote:This all started with a bad virus I got in the summer of 2000, so lately I'm thinking I should try some broad spectrum anti-viral strategies. Are there any of those that you know? Dr. Joey pointed me once to Olive Leaf Extract, but I don't know how that panned out. Any ideas?
I know that licorice root has been studied for antiviral properties, but too much over a period of time can definitely have an effect of salt and water retention, leading to higher blood pressure in many people.
I bet your biggest bang-for-the-buck will be in good handwashing hygeine & making it a habit not to touch your eyes or mouth. I'll keep looking for other things, though.
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Edited to add: Other safer agents with possible antiviral properties are aloe vera (common skin cream ingredient) and peppermint tea.
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quote:Originally posted by ClaudiaTherese: There is a subgroup of patients who seem to have difficulty in finding treatment for problems of many various sorts. They are usually women -- which makes me wonder if there is an autoimmune component, because we know many of those disorders tend to track along with sex -- and they find that their bodies are hyper-responsive to medications of widely different kinds, that they have unexpected and unexplained reactions and side effects, and they may be prone to systemic and hard-to-prove complaints which are, nonetheless, quite real (and such complaints tend to be characteristic of autoimmune disorders as well, such as pain and fatigue, which again makes me wonder about an autoimmune component).
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I expect you've found that physicians and other healthcare professionals have been markedly unhelpful in alleviating your distress. You may have had to argue with people to establish that yes, there is something wrong, even if it doesn't fit into one of their neat little categories. You may have felt embarrassed and ashamed because you were suspected of faking it or making it up. Or not -- perhaps that just characterizes those who've had the worst experiences.
I think this subgroup is often a funnel toward a diagnosis of chronic fatigue syndrome, and/or chronic pain syndrome, and/or depression.
Uh, yeah, that's pretty much me, except the docs dismissed the chronic pain & chronic fatigue, and skipped the chronic fatigue symptom entirely and went straight to "it's in your head". But then, you've heard at least some of this from me before.
It looks like mine isn't autoimmune but genetic - defective collagen.
Back when I was 18, I saw a neurologist for my migraines. He asked me a lot of what I thought were odd questions, including ones about my joints being hypermobile and my father's aneurisms. He even asked to see how I walked, which I did. He told me I had Ehlers-Danlos.
Problem was, he didn't tell me anything about it and I had no idea that it had anything at all to do with anything about me other than my migraines & odd joints and my father's aneurisms.
Either he didn't report it back to my family doctor, or my family doctor didn't pay attention. In any case, that was the last I heard of it. I was so young - and naive and trusting - that I didn't research it any further and forgot about it. Heck, it's just joints & migraines, right?
Until Tante Shvester brought it up in another thread a year or so ago, and I started reading about it, and remembered that diagnosis from half my life ago.
And the pattern in me & the family emerges with all these seemingly unrelated symptoms...
I'm still looking for a good rheumatologist here to confirm the diagnosis from two decades ago, but it's looking like this is it for me. It actually fits with everything that was otherwise unexplained. It fits.
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Great in the sense that I'm pretty sure it's what's going on and having a label that's accurate can make a difference in treatment and in not being called a hypochondriac and having them at least potentially take me seriously.
Not so great in the sense that there aren't any actual solutions to fix me, other than to treat the symptoms.
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Thanks for the ideas! I'm reading over the pages you linked for ideas. About to fall over right now but I'll post more later. This is just to say thanks, CT! Posts: 6246 | Registered: Aug 2004
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quote:This is so funny, because in every other aspect of my life I avoid caffeine. No coffee, no Coke, not even Barq's root beer. But yeah, I'm starting to wonder why these headaches won't go away (3 weeks now, every day) and if I'm actually making them worse by taking caffeine every day.
This is entirely anecdotal, but I got to a point when any caffeine would give me a near-instant headache. I know it's not psychosomatic because on a couple occasions I drank something (usually heretofore untried varieties of Jones Soda ) that I thought was uncaffeinated and got the headache and looked and - hey - what do you know? I haven't had caffeine since except for the time I accidentally drank it in a sports drink in Japan. I got a headache, so I read the ingredients (luckily caffeine is in katakana) and hey - there you go.
So it may wll be the caffeine, if that's the only variable.
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It's usually the absence of caffeine when you have become acclimated to it that causes headaches, I think. But it seems perfectly reasonable that some people would react to (low levels of) caffeine itself with headaches.
Posts: 32919 | Registered: Mar 2003
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I can't stand ibuprofen. Unless I'm dying, I stay clear of the stuff. Unfortunately, its the only stuff available out of the first-aid kit at work and I never think to carry a bottle of Tylenol (my pain-killer of choice.)
But I don't take Tylenol too often either because I'm incredibly sensitive to rebound headaches. Usually I chug water and better manage my sleep and sugar intake for a few days before I go running for my Tylenol Extra-Strength.
And yes, Aleve is the best. My friend was visiting for the weekend and complaining about knee pains. He said he had taken painkillers but they weren't working. I made him try Aleve and a few hours later he was pain-free. He couldn't believe it. I get bad knees during the winter (screwed them up dancing in high school) so I always keep a bottle handy.
My favorite drug though is Actifed. Yeah, I know its not a pain-killer, but it is a miracle worker. I can't find it anymore though. I think it went behind the counter or was reformulated or something. It got me through so many flu and allergy seasons.
Posts: 1733 | Registered: Apr 2005
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quote:Originally posted by quidscribis: Until Tante Shvester brought it up in another thread a year or so ago, and I started reading about it, and remembered that diagnosis from half my life ago.
I didn't remember that. I diagnosed that? I'm a flanken genius!
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quote:Originally posted by Shanna: And yes, Aleve is the best. My friend was visiting for the weekend and complaining about knee pains. He said he had taken painkillers but they weren't working. I made him try Aleve and a few hours later he was pain-free. He couldn't believe it. I get bad knees during the winter (screwed them up dancing in high school) so I always keep a bottle handy.
I get bad knees, too. All of my joints are hypermobile, and usually, it's not a big issue (although it's fun to freak people out with sometimes), but when the weather gets colder, the part under my kneecaps starts aching really badly.
pH, if you have hypermobile joints, you might want to get it checked out to make sure it's not anything more serious. I thought mine weren't any big deal either...
Posts: 8355 | Registered: Apr 2003
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quote:There is a subgroup of patients who seem to have difficulty in finding treatment for problems of many various sorts. They are usually women -- which makes me wonder if there is an autoimmune component, because we know many of those disorders tend to track along with sex -- and they find that their bodies are hyper-responsive to medications of widely different kinds, that they have unexpected and unexplained reactions and side effects, and they may be prone to systemic and hard-to-prove complaints which are, nonetheless, quite real (and such complaints tend to be characteristic of autoimmune disorders as well, such as pain and fatigue, which again makes me wonder about an autoimmune component).
This sounds like me! And most of the other women in my family! In addition, we have all kinds of other problems (asthma, pregnancy and period troubles, etc.) and I have weird shooting pains that started around puberty and have gotten steadily worse. We have joint problems, bone problems, allergies... I've been told by several doctors that by process of elimination, some kind of auto-immune thing is the only thing that really makes sense, but I don't have any recognized auto-immune disorder (I've had all the tests.) I think someday they will find out what causes it. Maybe they will name it after my family or something.
Really, though, name a drug and there's someone in my immediate family who can't have it. (Mine are benzodiazepans, one other drug that I can't remember, rubbing alcohol.)
Posts: 21182 | Registered: Sep 2004
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quote:Originally posted by quidscribis: Tante, you are a flanken genius!
pH, if you have hypermobile joints, you might want to get it checked out to make sure it's not anything more serious. I thought mine weren't any big deal either...
I've had it for, like, ever. I used to be in physical therapy, since that sort of thing becomes a problem if you run track or play basketball seven days a week. They pretty much told me it was because I got really tall really fast. I went from being slightly above-average height to Sasquatch skyscraper in....like, a year or two. But yeah, the physical therapist and my current trainer said it shouldn't be an issue, so long as I'm careful.
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Yup, I've had it for forever. You know, what with it being genetic and all. No, seriously, my joints have been hypermobile my entire life. I remember being six or seven and being able to put my feet behind my head. Both. At the same time. For example. And I can touch my thumbs to my wrist. Going in either direction. With both hands. And... the list goes on. Posts: 8355 | Registered: Apr 2003
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It's only my knees and ankles. But DCFS got called out several times when my brother was little because he was a rowdy kid with easily dislocated joints and constantly popped his shoulder out of its socket. (Finally his pediatrician gave them a letter to put in the file and they didn't come interview my parents for that any more.)
Posts: 21182 | Registered: Sep 2004
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That's not so bad - the knees and ankles bit only. For me, it's... everything. My shoulders have started behaving again, though - I figured out a good pillow arrangement for sleeping, and it's made a huge difference.
My back still has major problems with just about any position. Back in Canada, I had a really really really nice mattress. Firm support with pillow top - gave me the support I needed without it being uncomfortable. I had far fewer joint problems with that mattress.
But here, such mattresses don't exist. People here sleep either on the floor, on a 1" foam mattress, or on a 4" foam mattress. We had a 4" mattress when I first got here, but it was no good for me. So, we searched for a spring mattress - and I do mean searched, since they're really that uncommon here - and got the best we could find. It's better than the foam, but nowhere near as good as the pillowtop I had in Canada.
I'm at the point where my back is bugging me so much that I need to find a pillowtop-like solution. I'm not sure what it's going to be.
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Could you put a pillowtop overlay on top of the mattress? Hard to get, I know, but I bet you could make one, better than nothing...
Posts: 21182 | Registered: Sep 2004
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(Occasionally it's my wrists and elbows, too. And I've got severe TMJ problems. But at least my shoulders don't go like my brother's do.)
Posts: 21182 | Registered: Sep 2004
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That's what I'm thinking - a pillowtop overlay. But I have to have the necessary materials.
I'm thinking, basically, a quilt, only thicker, and I can sew it on my sewing machine. I'd need thick cotton so it doesn't wear out very fast, and the only kind of stuffing is polyester, unfortunately. Cotton is far better for me - I'm allergic to the unnatural fibres, but even the polyester quilt batting is difficult to get here, and is sold only in very very small quantities at a time.
It would end up costing a fair bit, relatively speaking, and with Fahim being unemployed right now, it's going to have to wait.
But yeah, I've got a plan.
My shoulders were popping out a half dozen to dozen times a night. Not so good. Which also meant that they came out during the day because the ligaments (tendons? I always get them confused) were too stretched. Now, they're not giving me problems at all. Well, relatively speaking.
My hands, though, have been giving me huge grief. Sprained my thumb a couple of months ago, and it's still not healed. Posts: 8355 | Registered: Apr 2003
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I dislocated my elbow twice when I was very young, so I guess it's possible it started earlier, but no one has mentioned anything more serious than the danger of sports injuries. I've never broken a bone in my life, despite many opportunities (car accidents, falling out of trees, jumping off high structures...). Sometimes (but not very often) I sleep funny, and my hip feels like it's falling apart for a day. What happened to make you guys' joints a more serious issue (beyond dislocating stuff)?
I think there's some truth to that. I mean, here I am, I should be working, I must be addicted, right?
I'm with CT on ibuprofen. I remember my life before it was available OTC . . . truly a miracle drug.
I can't remember who on p.1 mentioned having their jaw wired shut--was that in due to an injury or was it for another reason?
I should have had maxillofacial surgery years ago, but I was chicken, and now I know longer have the insurance to cover it. I have a much smaller lower than upper jaw, and as dentists/orthodontists have explained it to me over the years, the treatment would involve a) braces --which I wore for over too years as a kid and hated, b) surgery--break the jaw, reconstruct it, wire it shut for 6 weeks, and c) more braces.
I know I'd be a heckuva lot better looking if I'd do it, and I know that the misaligned bite will result in periodontal disease, but it sure is hard to want to subject myself to that voluntarily!
Posts: 3149 | Registered: Jul 2005
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quote:What happened to make you guys' joints a more serious issue (beyond dislocating stuff)?
For me, it's just that I'm prone to dislocations and resulting sprains for no reason, during normal activity (walking up a flight of stairs or carrying laundry or a baby, for instance), and they impede my day to day activity.
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I have issues with injury sometimes, but when I first started running a lot, right around my growth spurt, I was put in physical therapy which partly involved sticking electrodes on the specific muscles that would help prevent me from hurting myself. Maybe that actually made a difference. Have you tried physical therapy?
No, I haven't tried it. I did at one point do some exercises recommended by my dad to strengthen my thighs, because I was walking a lot and my calves were developing faster than my thighs, and it was putting extra strain on my knees, which were dislocating even more than usual. It helped some. But mostly I've been told it's genetic and there's not a lot they can do about it.
Posts: 21182 | Registered: Sep 2004
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quote:What happened to make you guys' joints a more serious issue (beyond dislocating stuff)?
Unless the doc you talk to knows and understands the issues surrounding hypermobile joints and its possible causes (Marfan syndrome, Ehlers Danlos Syndrome, for example, but I'm sure there are many, many more), then they won't understand how it can be more serious. Conditions like EDS are not common - EDS affects between 1 in 5,000 or 20,000 depending on who you talk to - and frequently go undiagnosed for years or decades if they ever get diagnosed at all.
EDS is a collagen defect. It can affect every form of collagen in the body - there are something like 30 or more different types. Hypermobile joints is just one of the more obvious examples. Stretchy (think circus freaks) skin is another. Less obvious examples can include painful joints, fatigue, IBS, asthma, cataracts, periodontal disease, painful problematic periods, light headedness, low blood pressure, headaches & migraines, aneurisms... The list is actually quite long. Surprisingly long.
quote:Have you tried physical therapy?
Yup. And it didn't work - as in, it didn't help, and my joints hurt just as much as before. The doc & physiotherapists didn't understand why not. Well, here's the thing - they weren't treating the actual problem, just the perceived problem.
Had they known what was really wrong with me, and were they qualified to treat that, the approach would be completely different.
As it is, traditional physiotherapy and physical exercise can actually cause people with EDS permanent damage.
quote:For me, it's just that I'm prone to dislocations and resulting sprains for no reason, during normal activity (walking up a flight of stairs or carrying laundry or a baby, for instance), and they impede my day to day activity.
Yup. Except for the baby bit, yup.
My joints hurt when I'm cutting chicken or chopping vegetables. My thumb dislocates if I hold a pot the wrong way. My back hurts from sweeping, standing... If I have a bad cough, I can (and do) dislocate my ribs. Just walking, I'll dislocate my knee, hips, ankles.
I haven't been able to knit for the past couple of months because of my thumb that dislocated - but in a worse way than normal - and still hurts.
Posts: 8355 | Registered: Apr 2003
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quote:Originally posted by ketchupqueen: Like I have money for that.
No, I haven't tried it. I did at one point do some exercises recommended by my dad to strengthen my thighs, because I was walking a lot and my calves were developing faster than my thighs, and it was putting extra strain on my knees, which were dislocating even more than usual. It helped some. But mostly I've been told it's genetic and there's not a lot they can do about it.
They told me it wasn't my thigh in general that I needed to worry about...since I played basketball seven days a week (sometimes many hours a day on weekends), my inner thigh muscle needed developing more than the rest of my leg. I needed to work on that "teardrop" muscle that soccer players get. Hence, funky electrode deals that shock the muscle around the inside of the knee. It felt cool.
quote:Originally posted by quidscribis: Conditions like EDS are not common - EDS affects between 1 in 5,000 or 20,000 depending on who you talk to - and frequently go undiagnosed for years or decades if they ever get diagnosed at all.
I AM a flanken genius!
Posts: 10397 | Registered: Jun 2005
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quote:Originally posted by quidscribis: That's what I'm thinking - a pillowtop overlay. But I have to have the necessary materials.
I'm thinking, basically, a quilt, only thicker, and I can sew it on my sewing machine. I'd need thick cotton so it doesn't wear out very fast, and the only kind of stuffing is polyester, unfortunately. Cotton is far better for me - I'm allergic to the unnatural fibres, but even the polyester quilt batting is difficult to get here, and is sold only in very very small quantities at a time.
It would end up costing a fair bit, relatively speaking, and with Fahim being unemployed right now, it's going to have to wait.
But yeah, I've got a plan.
My shoulders were popping out a half dozen to dozen times a night. Not so good. Which also meant that they came out during the day because the ligaments (tendons? I always get them confused) were too stretched. Now, they're not giving me problems at all. Well, relatively speaking.
My hands, though, have been giving me huge grief. Sprained my thumb a couple of months ago, and it's still not healed.
quid, My sister in-law has Ehler-Danlos and she has had good success with finger braces that allow her to knit and do other types of hand work without dislocating her finger joints. I will ask her what kind they are and where she got them.
Posts: 12591 | Registered: Jan 2000
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quote:Originally posted by pH: They told me it wasn't my thigh in general that I needed to worry about...since I played basketball seven days a week (sometimes many hours a day on weekends), my inner thigh muscle needed developing more than the rest of my leg. I needed to work on that "teardrop" muscle that soccer players get. Hence, funky electrode deals that shock the muscle around the inside of the knee. It felt cool.
-pH
When I had my knee surgery, they didn't have a definite diagnosis, but wanted to go in with a scope to find out what was going on. The surgeon then said that my knee problems were caused by a weak inner thigh muscle, so they sliced away at the rest of the muscle to balance it. For what it's worth.
The follow-up physio was to strengthen that muscle to prevent my kneecap from sliding around. The surgery stopped the pain for ten-ish years, but the kneecap continued moving around after that. I could get surgery again, but it would only be temporary as the tendon (ligament?) stretches again.
What with the slow wound healing time and the uncertainty of the outcome, it just isn't worth it. My hips and shoulders are in much worse shape.
quote:I AM a flanken genius!
Yes, yes, yes, yes you are!
quote:quid, My sister in-law has Ehler-Danlos and she has had good success with finger braces that allow her to knit and do other types of hand work without dislocating her finger joints. I will ask her what kind they are and where she got them.
Thanks, Rabbit. I'd appreciate it. Knowing my luck, they have to be special made and cost a fortune... On the other hand, it might be enough to get pictures off the internet to get some specialist equipment maker person dude guy to make some for me. Maybe. *sigh* I can hope, can't I?
Posts: 8355 | Registered: Apr 2003
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Ibuprofen never works for me, mine is acetamenophin or however you spell it. Other than that, it's caffeine. Posts: 2867 | Registered: May 2005
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Hey, kq, that was not, by any means, an exhaustive list. That's just what I thought of off the top of my head, also based on personal or family history - we have all of them. (More specifically, the only one I don't have is aneurisms.)
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I don't have aneurisms, cataracts, or periodontal disease, but some woman or another in my maternal line has all of them.
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Of note, it's a list of complaints that are common to many disorders, particularly systemic ones like those with an autoimmune component. For example,
quote:rheumatoid arthritis: morning stiffness, painful joints, general malaise, weakness, unexplained fluctuations in temperature, weight changes, pain in the muscles, pain in the tendons, inflamed and tender joints
polymyalgia rheumatica: pain and stiffness in the muscles, feeling worse in the early mornings and late at night, stiffness after prolonged sitting, low grade fevers, weight changes, fatigue, depression, decreased range of motion of joints secondary to pain
hypothyroidism: lethargy, generalized weakness, thinning hair, menstrual irregularity and pain, forgetfulness, fullness in throat, weight changes, muscle and joint pain or weakness, inability to concentrate, headaches, constipation, emotional lability or depression, pallor
[paraphrased from eMedicine articles]
Not that it isn't real, just that there is a huge category of disorders with somewhat overlapping symptoms. Additionally, the individual symptoms are often things that most people of a certain age experience to one extent or another, and so if you asked 100 people, you might get a good percentage of positive responses for any cluster.
Thus the very real phenomenon of "Merck Manual Syndrome" among medical students. You read about it, you recognize it, and you are sure you have it. (I am not saying this to make light of it. It is a real phenomenon, and I mention it as something to be aware can happen whenever someone reads about a disorder with vague and hard to define subjective complaints -- and one of the real dangers is you could be convinced it is one thing, when it is actually something else. Or, actually, all tied to something else, like depression, which makes you experience your own body differently.)
quote:Originally posted by ketchupqueen: I don't have aneurisms, cataracts, or periodontal disease, but some woman or another in my maternal line has all of them.
Even these more objective characteristics are relatively common. Brain aneurysms are incidentally found during heart surgery in about 5-6% of people, and that's only aneurysms in the brain. Another 2-4% of people have abdominal aneurysms. Clinically significant peridontal disease affects 15-25% of the general population. The most common type of cataracts is found in about 25% of people over age 50 and about 65% of people over 75, and there are other types of cataracts associated with things like diabetes.
That doesn't mean I think you shouldn't pursue this. Just that I think it's important to keep your mind open to multiple possibilities, given that there are so many possibilities with overlapping issues.
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quid, These finger splints are really close to the ones my SIL uses. They are pretty ridiculously overpriced but at least they aren't custom made.
Posts: 12591 | Registered: Jan 2000
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For what it's worth, also paraphrased from eMedicine articles:
quote:Lupus: low-grade fever, fatigue, malaise, nausea, weight changes, painful joints (often more than would be expected from physical findings), painful or painless ulcers in the mouth), rashes, headaches, sometimes difficulty with memory or reasoning, cough, vague abdominal discomfort
quote:Fibromyalgia: depression and/or anxiety, headache, irritable bowel syndrome, pain of various areas that is sometimes called "exhausting, burning, miserable, or unbearable," fatigue, poor sleep, difficulties with attention and memory, weight fluctuations, allergic symptoms (eg, nasal congestion), hypersensitivity to environmental stimuli (eg, odors, bright lights, loud noises) and medications, fainting or lightheadedness
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CT, I've been tested for everything, and while several doctors have concluded (mostly by process of elimination) that something autoimmune is going on with me (and most of my family), none of them know what it is. I'm okay with that; my symptoms are manageable so far. If they stop being manageable, I'll have to go back for a twenty-fifth opinion, I suppose.
I would add that while it's true that these things are fairly common, I would guess that it's not as common to have MOST of them in ALL the women and some of the men in the last three generations of your family. (We're lucky, though. Cancer and heart disease don't seem to run in our genes.)
On another note, is fibromyalgia recognized as a real disease now? I thought that there were still people who didn't believe in it.
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But then, you've heard at least some of this from me before. ![[Kiss]](graemlins/kiss.gif)
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All of my joints are hypermobile, and usually, it's not a big issue (although it's fun to freak people out with sometimes), but when the weather gets colder, the part under my kneecaps starts aching really badly.![[Wink]](wink.gif)
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And I can touch my thumbs to my wrist. Going in either direction. With both hands. And... the list goes on. ![[Eek!]](eek.gif)
Not so good. Which also meant that they came out during the day because the ligaments (tendons? I always get them confused) were too stretched. Now, they're not giving me problems at all. Well, relatively speaking.![[Mad]](mad.gif)
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