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Medical Forum / Diseases and Disorders / Arthritis / May 2007Newbie - Many questions
I think I may have some form of arthritis or maybe fibromyalgia or something -- I don't know. I have had joint pain on and off for 20 years, since I was 20 years old. I've gone through long stretches of time where I was totally fine and then other times where I wasn't so good, but those were brief. I was diagnosed with Lyme disease when I was in my 20s, but did NOT have Lyme arthritis. I had neurological Lyme. I was on medication for seven freaking years total -- intravenous (for over a year), im, orals, you name it. I have been off for a few years and have been okay but recently the bone pain has started again, worse than it had been before (I had it intermittently throughout my treatment and before, as I mentioned). I have a couple of problems. One is that I have grown to hate doctors. It takes SO MUCH to make me go to the doctor or dentist. It's weird. I just hate and fear them and expect them to tell me it's all in my head or it's all stress and all the sh.t I went through trying to get my Lyme diagnosed. In fact, I was at my ex-therapist's recently and told her how my bones hurt. She said, "I think you just need to exercise." I never went back to her after that. It reminded me so much of when I was having neuro problems with Lyme and the doctors told me I was stressed from work, etc. No -- I knew there was something wrong. I don't feel like facing that kind of "blaming the victim" thing doctors do again. Another problem is that I have NO DESIRE to have to take daily meds EVER AGAIN. Ever. I am sorry. I know how stupid I sound. It's hard to explain. I figured maybe if I found out a little more about this I wouldn't be so freaked out and could actually convince myself to go to a doctor. If a person has arthritis or fibromyalgia, do they always have to take daily medicine? Do the tests for these diseases hurt? Are they reliable and accurate (unlike the Lyme disease tests)? Does anyone know of any good arthritis or fibromyalgia doctors in the NYC area who are kind and gentle? I am sorry I sound so pathetic. It's just like I am having this, "f.ck, NO" reaction to having to deal with doctors and medicine again and I hope that hearing from people who have will help me. I think I should see someone but for some reason it's just so hard. Oh, one more thing, my aunt was treated for arthritis and somehow the medication messed her up and affected her heart. God, I don't want to have to research meds and doctors all over again. My symptoms may not even be arthritis or fibromyalgia. My joints get sore and ache and hurt and, well, this is weird, but sometimes it makes me feel better to have my arms or legs pulled. It's momentary relief, but it works. I never heard of anyone with arthritis getting relief that way, so maybe it's not arthritis. So, does anyone have any information and advice? Thank you in advance and I apologize for how weird this post sounds. Feels better when you take the pressure off the weight-bearing joints? What a classic symptom. Absolutely first thing I would be considering would be Adult Rickets. My symptoms may not even > be arthritis or fibromyalgia. My joints get sore and ache and hurt > and, well, this is weird, but sometimes it makes me feel better to > have my arms or legs pulled. It's momentary relief, but it works. I > Feels better when you take the pressure off the weight-bearing > joints? What a classic symptom. > Absolutely first thing I would be considering would be Adult Rickets. That was my thought, too - because I went through some of the same stuff, though I do think I had Lyme, too. But 80% of the pain went away after my rheumatologist did a test for vit D levels, found they were way too low, and gave me a megadose supplement for 5 or six weeks. The relief was amazing! Adelle Anybody that has articular joint pain that lives in an area that gets snow during the winter, or daytime spent inside, should see about getting their Vitamin D level checked. If there's a problem, it's one that can be dealt with. Several doctors do it as part of the assessment for fibromyalgia, and arthritis, others don't even consider it. Go figure. > > joints? What a classic symptom. > > Absolutely first thing I would be considering would be Adult Rickets. [quoted text clipped - 5 lines] > > Adelle Michael, speaking of Vitamin D (and, yes, I do live in an area of snow and spend a lot of time inside): I take 2 Calcium Supplements (with Vitamin D) - 1,200 mgs. daily. In your own experience/knowledge, do you think that is sufficient for FM? I'm not sure whether I have been checked for my "D" level. Nanny > Anybody that has articular joint pain that lives in an area > that gets snow during the winter, or daytime spent inside, should see [quoted text clipped - 15 lines] >> >> Adelle That would sorta be like me answering a question of how long a board should be. Depends on the circumstances. A person's calcium RDA is about what you mention. So if you take it with fats and Vit. D so that it's absorbed, you're probably getting 400 units of Vitamin D a day along with that, assuming good absorption. But there are some serious toxicity issues for Vitamin D. So the levels that are available as OTC are deliberately low enough that people with adequate Vitamin D don't go beyond into toxic levels. And if a person is running a net loss in Vitamin D, the amount they get from supplements, such as what you describe for yourself, are not likely to bring you up to excellent levels. Remember the days of cod liver oil? But as I've reminded before, best thing is to get a Vitamin D assessment. Be nice for you to be getting at least 15 minutes a day of sun during the good times for it. http://healthlink.mcw.edu/article/1031002458.html > Michael, speaking of Vitamin D (and, yes, I do live in an area of snow and > spend a lot of time inside): I take 2 Calcium Supplements (with Vitamin [quoted text clipped - 23 lines] > > >> Adelle > That would sorta be like me answering a question of how long a board > should be. Depends on the circumstances. [quoted text clipped - 50 lines] > > > >> Adelle Thank you so much for all your answers. I will mention them when I go to the doctor. I think I may have found one, maybe. A friend of mine has a friend who has a doctor who she says is kind and listens, so we'll see. I don't even know if he takes my insurance. I don't know if the answer is my vitamin D levels. I try to have yogurt or cottage cheese every day, so I thought I was getting enough, but I might not be. The other thing is that I have pain in non-weight bearing joints -- like my arms. And it feels better sometimes to have them stretched and twisted. I know that's weird, but sometimes they just hurt and ache and I will ask a friend to pull on them or twist them and I get some momentary relief. Still, this vitamin D info is good info. I hope it's that, or something as simple as that. Again, the responses here were really interesting and informative and I appreciate them. Thank you! Was there something I said to give you the impression that the arms were not included in adult rickets? If I caused you to get that idea, I do apologise. Arms, legs, back, and pelvis can be involved. But enough of Adult Rickets, other than the reminder for anyone that finds themself with arm, leg, back, or pelvic pain that is of unknown etiology, or with a questionable diagnosis, to know how their Vitamin D level is running, especially those that get less sun. In a Minnesota study of people that complained of muscle aches and pains and bone pain, 93% were Vit. D deficient!!! http://www.newstarget.com/004727.html Regarding other stuff, in another thread I reminded a poster that a muscle in spasm can be limiting its own blood supply, and learning to stretch the specific muscles can give them back their needed oxygen. Sure beats a weak and unreliable grip, along with arm spasm that medication can't resolve. An appropriately selected stretch can correct the "Charley Horse" in the arm, and make a painful one into a happy one. And if you get momentary relief, the next step would be to learn stretches for more longterm relief. > might not be. The other thing is that I have pain in non-weight > bearing joints -- like my arms. And it feels better sometimes to have [quoted text clipped - 4 lines] > the responses here were really interesting and informative and I > appreciate them. Thank you! >> That would sorta be like me answering a question of how long a board >> should be. Depends on the circumstances. [quoted text clipped - 74 lines] > the responses here were really interesting and informative and I > appreciate them. Thank you! Stretched? Yes that's a good word for it. My arms and shoulders felt like I was wearing a weighted vest and there were weights hanging from my hands. And as the day progressed, I got more tired and achy throughout my body. Good luck! And in the meantime, go enjoy the sun. Adelle Thanks, Michael. Oh, yes, do I ever remember cod liver oil. When we were children, my Mom would line us all up (4 sisters) and one by one each one of us would get a spoonful of cod liver oil. At least my Mom was merciful and would usually pop a stick of gum in our mouths after we swallowed the cod liver oil. I guess my Mom was aware of the benefits way back then. Now that the weather is sunny and warm, I don't think I'll have any trouble being in the sun at least 15 min. a day. I'll ask my Rheumy about the Vitamin D assessment. Nanny > That would sorta be like me answering a question of how long a board > should be. Depends on the circumstances. [quoted text clipped - 56 lines] >> >> >> Adelle Kinda nice to be able to get your "medicine" by being out in the sun. http://www.newstarget.com/003069.html > Thanks, Michael. Oh, yes, do I ever remember cod liver oil. When we were > children, my Mom would line us all up (4 sisters) and one by one each one of [quoted text clipped - 4 lines] > being in the sun at least 15 min. a day. I'll ask my Rheumy about the > Vitamin D assessment. Nanny > Kinda nice to be able to get your "medicine" by being out in the sun. Its one reason Charlie insisted I get Kayla. She makes sure I get outside at least 20 minutes every day unless it is pouring rain. It took a while, but I do feel better. Jo >Michael, speaking of Vitamin D (and, yes, I do live in an area of snow and >spend a lot of time inside): I take 2 Calcium Supplements (with Vitamin >D) - 1,200 mgs. daily. In your own experience/knowledge, do you think that >is sufficient for FM? I'm not sure whether I have been checked for my "D" >level. Nanny I take 2,000 I.U. daily in the winter and drop to 1,000 I.U. in the summer when I get more sun. My RD says that is safe, and the recommended daily intake for everyone is now 800 I.U. up from 400. Joan Hey, thanks for coming in on this one. There really hasn't been much effort to make note of this, and there are by other accounts a lot of undiagnosed cases. Kinda helps for someone to be able to personalize it. > > joints? What a classic symptom. > > Absolutely first thing I would be considering would be Adult Rickets. [quoted text clipped - 5 lines] > > Adelle A series of answers: Firstly, over the years, between moves and retirements, I've had 8 rheumatologists (docs who treat arthritis AND fibro). Most of them have been good, two past ones have been EXCELLENT and I would make a beeline for their offices were I living near them again. One of those is now located in NYC at the Hospital for Special Surgery - Lisa Mandl. She really knows her stuff and likes her patients to know what's going on and to be participants in their care. I only saw her for a year before she moved away, but I miss her still 5 years later! Oh, and while checking to see if she's still there, I discovered the rheumatology section of the HSS website has a lot of useful information on it. Whether you will need to take daily meds again or not depends on the ultimate diagnosis. I know that's not helpful, but it is the reality. The key here is that you will KNOW when you keep up with the meds or don't. I still get tired of taking pills, esp. as I take them at least 4 times/day, but I really feel the difference when I take them. That makes it much easier to take them on a daily basis. You are quite aware of the difference the meds make in your functioning. Let me tel you - pain relief becomes an excellent motivator! Ok, now, a good doctor will take you symptoms seriously and will look to find a root cause for them. At the same time, you can help a lot by assembling information BEFORE you see the doctor. As much as possible, track what symptoms you are having and any activities that help or hurt. Also, pinpoint exactly where you hurt as much as you can. Things like what time of day tends to be worst, if you have trouble loosening up in the morning and how long does it take, what activities are most painful, etc. The more info you can assemble starting now, the more complete of a picture can be presented to your doc. And once again, about good docs, you should be able to discuss any fears or concerns about meds with them - and they should be able to tell you what they will be doing to monitor for complications. Sometimes, they will sound like a record when first going through that, as they have said it so many times before, but they will talk with you more specificaly if you ask them. And a doctor *should* be able to tell you what s/he thinks is going on, or ven to say I won't know until we do some testing. Heck, I've had 4 doctors thinking out loud in my presence in this month! The tests mostly consist of needle sticks to draw blood and poking and prodding at the sore and tender places to feel for abnormalities. It may hurt at the time, but htat is usually short-lived at worst. You may also have Xrays done, but that is rarely painful. Heck, now that I think about it, really good doctors will be responsive and understanding if you tell them of your past experience and how it has made you leary of doctors. Good docs know there are less good docs out there - they clean up after them all the time. Give one a chance to help you. Oh, and another thought is to find an arthritis support group - I'm sure there are some in NYC! Folks there can give you the straight skinny on area docs. But i DO miss Dr. Mandl.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare this is great info Nann, thank you for sharing it with all of us. SignatureLove and Hugs to all Jo the squirrely one >A series of answers: > Firstly, over the years, between moves and retirements, I've had 8 [quoted text clipped - 70 lines] > area > docs. But i DO miss Dr. Mandl. |
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