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  WAY OT-Rheumatology-Any Experience?
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Picture of *Bella*
Since the monitors seem to have flown the coop......

This doesn’t have much to do with decorating or projects really-except that I can rarely do any of it anymore. This is a relatively new problem that started maybe a year or two ago and is really interfering with daily activities. Since I live out here in Timbuktu and many people aren’t knowledgeable about a lot of things and don’t ask questions, I don’t know where to go for first hand information, possible causes, and realistic possible upcoming treatments and expectations for quality of life in the future.

Some background-a year or so ago, I started having problems with swollen aching joints, especially in my knees, ankles, and hips. In the last several months, it has also been affecting my hands, elbows, and shoulders as well as some issues with cramping in my back (probably scapular) and stiffness in my spine. Anyone familiar with the type of activities I used to do when I first came on this board will remember that I used to work my backside off from dawn to dusk. There are aches associated with overworking muscles and sometimes I experienced them. What I am experiencing now is different. I can tell which aches are from activity and which ones are from something else that is yet unexplained.

At first, I thought it was from stomping around on concrete floors all day, so I went to part time. It didn’t help. Then, I analyzed whether it was side effects from some new medications that I started taking when I started “the change.” Once I ruled out the obvious, I determined it wasn’t something within my control to correct, I made an appointment to see what was up. They did some testing and x-rays of the joints and determined that I have great joints with none of the standard arthritic deterioration there, so osteoarthritis is not suspected. It seems to be a soft tissue issue (muscles, tendons, nerves) and not actually in the joint itself. There’s usually some swelling and sometimes fever. The blood tests determined that it wasn’t Lupus, that I was vitamin D deficient (what’s that about since I spend all my extra time outside!???) but that the Rheumatoid results weren’t favorable. They didn’t specify what that meant and scheduled an appointment with a specialist at Vanderbilt for further testing. The first appointment available is mid-December.

Here’s the hard part for me. When this stuff kicks in, it locks up the joints so that normal function is extremely difficult. Two weeks ago, Donnie had to help lift me around the house just so I could get from point A to point B, so now this is affecting his life too. When the test results came back, I asked if they could call something in to the pharmacy that would at least provide some relief-which they did. It was a cortisone tablet series that tapered off over a two week period. I took the last one yesterday. During the time I was taking the meds, I was able to function normally with no limping, no locked up hands, and could walk myself upright to the potty at midnight without holding on to the furniture.

While I was able to do some things during this time, I still took it pretty easy so as not to add undue stress. I took it very easy the last few days since the remaining dosages were low. This morning, to my absolute despair, I woke up with my back entirely cramped up (and not relieved by a muscle relaxer which I tried first thing!) and a knee that is reverting to its torturous state which on a scale of 1-10 rates about a 7 on the average day and a 9 the day Donnie had to help me (10 being the point of passing out in my book.) I can tell the treatment isn’t going to hold out for long.

I’m having a really hard time with this and I’m absolutely terrified. I’ve never let things keep me from being at least somewhat productive. Usually when my body hurts, I can press on at least a little and still get things done. Lately, I can’t even ride the mower to cut the grass. There are a million little projects I want to do, but can’t stand upright to do them, can’t use my hands, can’t stand on a ladder, and even scooping the litter box sometimes involves tears (and I’m not a crier). The upside is that the laundry is clean! I can still do that albeit slowly. Smile Mostly, I spend my days as a vegetable, listening to audiobooks since they keep my mind quiet so that I can be still.

I know what I’m going through is part of the aging process and while I’m not happy about it, it happens to everyone and that it’s something that needs to be accepted. Since I’m not even 50 yet, I know I’m one of the younger people here, so even though this is all way OT and way too personal, I know where the expertise lies. Y’all aren’t only experts on décor, but on life and the process of it too. Hopefully, no one has experienced this kind of miserable torment, but if someone has, I’d love to hear anything you care to share-what it is, how you handle it, treatment, experienced side-effects, that would be great. I think we have some medical expertise here too. I’d love to hear the possibilities from the professional perspective as well. I’ve Googled things and wasn’t extremely enlightened, besides, I’d much prefer to hear from the voice of experience and people I “know.” Smile

Sorry, if I sound like a whiner. I’m just kinda scared. Thanks so much!

Posts: 4031 | Location: West TN, Zone 7a | Registered: Jan 05, 2007Reply With QuoteReport This Post
Picture of WWanda
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Aww, Christie, I'm sorry to hear this. You're too young to be experiencing these symptoms!

I'm a few years older than you and things definitely are not as easy as they used to be. I chalk it up to weight, lack of exercise, smoking, etc.

I have occasional hip, ankle, and back pain, but have never had it diagnosed so I really can't give you any advice. DH is experiencing a lot of what you describe, and will be going to the doctor's soon.

I truly hope that a doctor can help you and prescribe some meds that will alleviate your pain.

This aging stuff just ***!!!

This message has been edited. Last edited by: WWanda,

Posts: 4869 | Registered: Feb 12, 2008Reply With QuoteReport This Post
Picture of joyluck
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It's 43 years since I first had serious pain presumably from arthritis altho I'm not sure it was diagnosed properly. I had had various unexplained pains and aches since childhood but at age 28 I suddenly had almost incapacitating pains. Dr. prescribed aspirin which helped somewhat and the episode resolved. Since then I've periodically had episodes of joint, muscle, bursa, and tendon pain (as diagnosed). I think consulting a specialist is one of the first things to do but also arming yourself with good info is likely at the top of the list. After many years of being professionally involved in the allopathic medical system I am now doing mostly natural treatments/remedies for many of my health needs so my suggestions will be mostly in that direction.

Pain, whether due to joint, muscle, or other sources is often caused by inflammation. Fortunately there are many ways to reduce that, diet being key. Avoiding sugar, and as is often said, everything white is a good start to a healthy diet. Also worthwhile is avoiding foods from the nightshade family which includes white potatoes and tomatoes. Reducing intake of red meat and avoiding wheat also sometimes helps. So lots of fresh veggies, gluten-free grains, and seeds and nuts might form the bulk of a healthy diet. This type of diet is also a great way to lose weight and since excessive weight causes increased stress on joints is a good side-effect.

Heat, either with a heating pad or hot baths and showers can help relax muscle spasms.

I find the Traumeel products (topical cream and pills) effective for various pains and aches. Capsaicin topical cream is also helpful for some people.

Glucosamine sulfate (not glucosamine hydrochloride) helps some people.

Natural anti-inflammatories such as fish oils, curcumin, and boswellia complex can help and have fewer side-effects than pharmaceuticals.



Massage and Chiropractic - helps with muscle spasms

While it seems counter-intuitive it's important to stay as active as one can comfortably be. Otherwise muscles contract and one is on a very slippery slope to disability. Before trying to do any exercise or work a hot bath and using one of the creams mentioned above might provide enough relief so gentle stretching and moving is possible.

I know I am now healthier and feel better at age 71 than I did 20 years ago as am very careful with my diet (mostly vegetarian and organic), take supplements and vitamins as recommended by my Naturopath and Holistic MD and try to maintain a positive outlook. Yes, aging is not always fun but the alternative is final.

You will find what works for you Christie if you keep an open mind.


"I have always had an aversion to the concepts of in style and out of style." ~Rose Tarlow

Inspirational pics:
Posts: 12765 | Location: north of 50 in Canada zone3b | Registered: Feb 08, 2006Reply With QuoteReport This Post
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So sorry that has gotten so bad for you.

Are you taking statin drugs for cholesterol? I have heard that it can cause real problems/pain. I am on one, but not bad yet.

Also do you drink a lot of diet sodas? Heard that is causing a lot of trouble too.

I sure hope your doctor can get you some relief.



Friends divide our sorrows and multiply our joys.
Posts: 6398 | Registered: Sep 20, 2002Reply With QuoteReport This Post
Picture of paintlady
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-Christie, my heart goes out to you. I do not have experience with what you are going through. I do have osteoarthritis and full blown osteoporosis which has just been diagnosed. Frown I'm only 51. Oh well...........

I do believe in what Lucky has explained about sugar and white products. Gluten is also not good for a lot of people. I would highly recommend giving up all the white which I did over a year ago and feel a great deal better. Plus my doctor said my labs were outstanding since doing this and to keep up whatever I was doing. Diet is so very important. I also do not eat red meat at all and haven't for some time now.

The issue brought up about statin drugs is also one to consider if you are on any statin cholesterol drugs. They can be very bad in some people's lives. My mother is one. She was perfectly functional and mobile when she began taking one of the Statin drugs. Within 6 months she could not walk at all. She went through many tests, and my nephew who's a physical therapist told her to stop the statins immediately. Within 2 weeks she could walk some again with assistance. After much testing and physical therapy, she now walks with the assistance of a roll-ator. Reluctantly, a doctor finally diagnosed her with being statin intolerant. Severe muscle and nerve damage had been done. Many doctors refuse to admit these drugs do this. You must be pro active if you are taking them and decide if it's worth it. My mom now takes the highest and purest form of Fish Oil daily and a drug called Welchol (sp?) which has reduced her cholesterol to an acceptable and manageable level. One does not have to take a statin drug just because a doctor recommends it. There also books on reducing cholesterol naturally and with a diet geared toward this goal.

Okay, sorry for the book, but when I saw some of this, I wanted to add what I had knowledge about.

May you find answers that work for you. Don't hesitate to question doctors and consider if certain medications are worth the risk. I've come to realize they are mostly all bad! That's just my opinion. I'm anti medication when possible. I know that's not always possible though.

Oh, and I also believe in acupuncture and chiropractors. Don't know what I would do without mine.

This message has been edited. Last edited by: paintlady,
Posts: 9012 | Registered: Jul 21, 2005Reply With QuoteReport This Post
Picture of lady of shallot
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I know what I’m going through is part of the aging process and while I’m not happy about i

No, Christie it is not. I am 79 and have never experienced such pain, disability and discomfort.

You need to be checked out by a really wonderful team of doctors and sounds like you do have such an appointment coming up.

Have you considered fibromyalgia? I don't know much about it but have heard from others that the symptoms sound similar to yours.

There is no way you sound like a whiner. You sound like an intelligent woman who is scared and suffering and worried.

DH slipped some discs (two different times) and these is the only similar experience to yours in our household. He literally could not turn his head from side to side while lying on his back. Trip to the hospital determined what the cause was and he was on morphine drip, leg things (to keep blood flowing) etc. then exercise and heavy duty meds for more than a week after release from hospital.

Do not criticize yourself. Seems to me they should have admitted you to your local hospital and run exhaustive tests.

Just another word. Our primary care physician was absolutely no help to us. Despite two calls where I spelled out in very careful detail the situation here he had his nurse call us and tell DH to take two tylonal. Needless to say he is no longer our primary. I'd check with a different doctor if I were you and maybe if you know anyone in the medical profession call them to ask what kind of doctor.
Posts: 13131 | Registered: Jun 27, 2004Reply With QuoteReport This Post
Picture of *Bella*
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Wanda-yeah, I always thought it would be several more decades before things really started to fall apart! Imagine my surprise when at 43, I discovered I couldn’t read things up close any more! So much for invincibility! They laugh at me at work because I put on a pair of reading glasses over my regular glasses. Ok, so I’m a dork. Smile

While I don’t do the regular exercise thing, I’m usually outside doing outdoor things that usually keep me from going too far down hill. Somehow, since we moved to this place, I managed to lose 20 lbs without trying. While this is great, I sometimes wonder if there’s an underlying cause since I dieting isn’t in my vocabulary. I mostly chalk that up to staying busy when I can. I think I’ve munched everything in the house over the last 2 weeks though. Something about the steroids/cortisone business just makes me want to shovel it in. Eek Like you, the smoking thing probably contributes to some things and while I hate the habit, it isn’t something I think I’ll ever find a way to give up as much as I’d like to.

If your husband is having similar issues, have the doc run some tests in case it is something that can be headed off early. One of the tests they did was to measure the amount of inflammation in the bloodstream. It would be good to know if his elevation is higher than normal. From what I read, rheumatoid issues are rare in men, but not impossible. I knew of a guy that had it. Check out some of the things Joyluck suggested. Maybe chemical meds can be avoided for both of you.

You got that right. Aging ****s!

Joyluck-your story about the aches and pains from childhood are familiar. One of my first memories of childhood is screaming about the pain in my legs while at a baby shower someone was having for my mom. The doctors said it was growing pains. I had them all my life and in the military, they said it was arthritis and prescribed Motrin to be taken a couple thousand milligrams at a time. It didn’t help. I’ve always wondered if this is actually something I’ve had all my life that like your situation, went misdiagnosed and now that I’m getting older, it’s manifesting itself more aggressively.

I’ve tried cocktails of various over the counter drugs, but nothing kicks it. I’ve tried hot & warm soaks and cold compresses, but they only relieve the discomfort while I’m doing it. They don’t reduce the swelling and are immediately ineffective when I’m done. I have every kind of topical treatment known to man. This is part of what is making me crazy. Nothing I try works. It goes away in about 3 days and sets up residence in a new place. It’s ridiculous, really.

There were elevated levels of inflammation when they did the testing, so that is a known contributor. I guess that’s why the meds work temporarily. I’ll have to investigate those things in my diet that you mentioned as contributors. I know there is plenty of white sugar intake due to the amount of sugared coffee I drink all day. I opt for real sugar because I don’t use chemical sugars at all-not even in food. Is the brown granulated sugar (not the baking kind) an option or is it just as bad?

We pretty much eat a variety of things around the house. Donnie eats a lot of bread, but I usually don’t. We do have some potatoes and tomatoes in meals, but usually only once a week. With the extra time that I have on my days off, I’ve started doing little cooking of meals , so Donnie, the burger boy is learning to find turkey, chicken, tuna, and salmon better than burgers, so we don’t have a lot of beef around our place anymore. We do have veges with every meal and sometimes whole grain breads although we prefer the fresh baked French and Italians better unless we’re having sandwiches. For the most part, I try to avoid chemical sweeteners and food preservatives (like almost everything boxed and prepared off the shelf at the grocery) as much as possible. I have a theory that the stuff’s gonna kill us…not to mention some of the health problems today’s children have that were unheard of when we were kids. I think chemicals in our food might just play a huge part in that (although I’ve done no research on the subject)

I’ll try some of those alternatives you proposed. While sometimes it’s necessary, I don’t care to be a pill-popper. People figured this stuff out before chemical meds were available and since I like to research and experiment with possible options, it’s worth giving them a try as I’d like to keep my prescribed meds to a minimum.

You’re also right about movement. I can’t stand to be idle. Donnie doesn’t understand it, but when I’m not well, I still press on with whatever I have to do. He goes to bed and doesn’t get out until he feels better. Needless to say, I usually recover in a fraction of the time that he does. I keep lecturing him on circulation and fresh air, but I don’t think guys in general get it. Smile Since this has been going on, I still have to move around. I do find it helps keep things more limber which is why I go to work even though I can barely get out of the car. Truth is, sitting in the chair with my legs hanging down is one of the things that makes it worse.

Thanks for your input on non-traditional options. I suspect losing sight of those may be having a bigger impact on our lives than we realize, simply because it doesn’t occur to us.

I’m glad you’re feeling so great!!! I’d be happy with feeling as good as I did at 40. Smile

Strings-A couple of years ago, my Dr. prescribed a statin drug for cholesterol, but after taking it for a couple of weeks, I decided I would rather live with high cholesterol (which everyone seems to have these days) than the side effects. I don’t remember if it was joint pain or digestive issue, but it just wasn’t going to fly. I didn’t feel like it was so high that I was in danger of dying, so I just skipped it. I like my doc. I told him I quit taking it and he doesn’t bug me about it. He just says anytime I want to have the standard panel done to just let him know.

As far as the diet sodas, never. Even when they were the hot new thing, I couldn’t stand the taste of them, fortunately. My little sister was, and might still be a diet soda nut, but I think some of her health problems (kidney cancer & multiple tumors-she’s ok now) may have had their roots in chemical sweeteners. I’ve always been a real sugar girl-which looks like it might be my downfall (although my issues are petty compared to my sis.) You know what they say, ‘Da**ed if you do, d**ed if ya don’t’. Roll Eyes

PL & LOS, Be back shortly!

Posts: 4031 | Location: West TN, Zone 7a | Registered: Jan 05, 2007Reply With QuoteReport This Post
Picture of teewa
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Bella - speak with your rheumatologist. Biologic drugs are available - Humira, Remicade, Enbrel, Simponi. They'll find the right one for you and the relief is remarkable. (This isn't an ad...I have personal knowledge.) Good luck.
Posts: 532 | Location: Canada | Registered: Mar 19, 2003Reply With QuoteReport This Post
Picture of Sonny Dayz
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so sorry to hear you're in pain.

if possible do your own experiment-- no sugar, no white food or food product of any kind.
basically no carb food.. in 72 hours without medication stronger than aleve you should notice a marked decrease in your pain level..
oh yea and 64 oz. of Pure water per 4 hours..
good luck.

to see my projects view my Blog.
Posts: 10043 | Location: NC ~zone 7B | Registered: Jun 23, 2008Reply With QuoteReport This Post
Picture of junk collector
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Sorry to hear you're feeling unwell. Some foods that are reported to help inflammation are berries and tart cherries. Please be careful with otc meds like tylenol and Advil. You can take too much and have reactions to the meds.
Posts: 3506 | Registered: Aug 06, 2007Reply With QuoteReport This Post
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Hey Christie, so sorry you are having these problems! It's really hard to face something so debilitating, to be in pain, unable to do the things you want to do...

I'm not a doctor, have no personal experience with this, but it sounds like rheumatoid arthritis, which is an autoimmune disorder.

Link here:

I know RA affects more women than men, usually between the ages of 40 and 60. It initially starts in the "small" joints, i.e where the toes meet the foot and the fingers meet hand. Vitamin D deficiency is associated with RA.

I hope you are able to get some answers from a specialist and hopefully get back on the road to doing what you want and need to do. Best wishes for a full and speedy recovery!

Edited to add: Your primary doctor should be able to prescribe you something until you see the specialist. No WAY should you live with that much pain for over a month!

This message has been edited. Last edited by: norahs978,
Posts: 1411 | Registered: Aug 27, 2004Reply With QuoteReport This Post
Picture of joyluck
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Originally posted by *~Bella~*:
I opt for real sugar because I don’t use chemical sugars at all-not even in food. Is the brown granulated sugar (not the baking kind) an option or is it just as bad?

From what my Naturopath and Holistic MD tell me all sugars are bad. Even eating too much high fructose fruit such as bananas and grapes is not recommended. I use pure stevia which they both recommended as being safe and even healthy. Much prefer sweetened tea so use stevia. Not all brands are equal tho and some have an aftertaste. I've found New Roots brand the best. Unfortunately stevia is not easy to bake with so the few times I bake I use organic sugar. Have learned to not miss those foods much.

You are wise to avoid chemical sweeteners as they are very toxic and carcinogenic.


"I have always had an aversion to the concepts of in style and out of style." ~Rose Tarlow

Inspirational pics:
Posts: 12765 | Location: north of 50 in Canada zone3b | Registered: Feb 08, 2006Reply With QuoteReport This Post
Picture of DonnaDGO
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Christie, have you had any thyroid tests done? As a long time thyroid disease sufferer, I can vouch for the fact if your thyroid is misbehaving it can be MISERY, in so, so many ways. Including some you mention.
Posts: 1197 | Location: GA | Registered: Jun 10, 2004Reply With QuoteReport This Post
Picture of judy j.
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This does sound a lot like the symptoms I had when I found out I had an under active thyroid.I was in my early 40's at the time. If you haven't already had a thyroid test done you really's a simple blood test and at least you could rule that out.You have my sympathy.
Posts: 369 | Location: ky. | Registered: Dec 03, 2002Reply With QuoteReport This Post
Picture of *Bella*
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Paintlady-sorry to hear what’s going on with you. We’re WAY too young for all of this! In fact, 90 is way too young! Are you able to function pretty normally with the osteoarthritis? Please be careful with the osteoporosis. As I get older, I don’t mind so much having a little “padding” since I’m hoping it may help prevent broken bones later.

I’ll have to do some thinking about giving up white stuff. Giving it up altogether would pretty much cut out half of what we eat and I’ve finally gotten Donnie interested in things other than burgers. I might be able to half the sugar in my coffee as long as I skip the creamer, so that’s a start I guess. I’d much rather have salty foods than sweet ones, so I can skip cookies, etc if I feel like it (Smarties are a different story though). Other than that, we have potatoes, pasta, and rice in reasonable portions at least once a week. Donnie always has a couple of slices of bread, but I usually don’t have any with my meals unless it’s a tuna sandwich for lunch on my day off and then it’s usually a grain bread since white sandwich slices don’t have much merit in my book. Usually, I keep my relationship with food in moderation-well, except for the coffee and the Smarties thing Big Grin I think I’ll try some experiments and be a little more diligent on the sugars for a while and see if it helps. Giving up everything might not be possible, but I’m sure there’s room for compromise somewhere.

It’s interesting about the statin drugs. I took them for probably about 2 weeks then abandoned them. It happened to be about 2 years ago. I doubt that it’s related, but since your mom is still affected by her experience with them, I suppose it’s possible. I just chalked it up to walking the concrete all day. I hope in time she is able to be better. This is one of the reasons I’m reluctant to take a lot of meds. I’ve seen too many side effects from things that have made people worse than what they were being treated for in the first place.

Donnie’s mom is one of the people that I suspect has declined by treatments that were meant to make her better. She’s had RA for several decades and her poor little fingers and toes will just break your heart. She says she isn’t usually in pain, but there are so many things she just can’t do anymore and she used to be an active lady. Although I don’t think it was necessarily the RA meds that caused some of her other problems, I think it was a toxic cocktail of meds to correct problems along with meds to relieve the side effect of the meds to correct problems, and so on, and where does it stop? I worry about her a lot.

As far as chiropractors and acupuncturists, I’d feel safer standing in traffic at rush hour! There is a chiropractor in Trenton and I hear he’s perfectly competent. I’ve considered going because I hear the results are amazing, but in a tiny TN town, I can’t wrap my head around letting him mess with my back. I’m sure I’ll get over it eventually and go see the guy, but some of these folks and needles? I’m not sure how long it would take before I would let them come near me with that! Yeah, I might have a few trust issues. Roll Eyes Have you ever tried acupressure? Having spent a few years in Asia, I think these types of treatments have merit (because the science of nerves, electricity, gravity, etc, makes sense) but have never been in a position to need to try either of them.

LOS-Fibromyalgia was one of the first things I looked up when I decided I was having an issue that wasn’t going to go away. I had a roommate for a few days when I was stationed in TX that was there having testing done for that very thing which was why I thought to look into it. I also looked into MS and a couple of other things that I can’t think of off-hand. After deciding I still didn’t have a clue, I made an appointment with the doc so they could run some tests. When the results came back, they indicated that I should see a specialist for additional testing. There’s an arthritis center nearby, but the first appointment they had available is in February! My primary care Dr. said that if I wanted to go to Memphis or Nashville, I could probably get in a little sooner. I made the appointment locally just in case and in the meantime, we were able to get an appointment at Vanderbilt. Since I’m from the Nashville area and am familiar with the various reputations, I’m much more comfortable going there. My family all still live in the area, so I can sneak in a visit.

OMG! I can’t believe that about your PC. Sounds like you needed a new one for sure! Sometimes I take Tylenol if I have a fever. Otherwise, it’s pretty much useless. Glad to hear your DH was able to get fixed up without too much more nonsense. Sometimes the medical profession can be downright frightening. Fortunately, I think the bad stuff is more the exception than the rule.

I’m glad you’re so healthy for your age! If at all possible, try to avoid aching. It really is a nuisance! Smile

Teewa- Thanks for the positive input on the relief that may be available. I imagine this is one thing that I will be willing and maybe even excited to be medicated for! My experience with other people with RA isn’t positive. My mother in law, for instance, isn’t highly mobile anymore and although she does function, I know she gets frustrated about not being able to move her fingers to do simple things and a father of a friend was wheel chair bound/house bound and became an alcoholic as it was the only thing that would give him any relief at all. This is really my only experience with it, so I’m glad there are people out there with more positive outcomes. My first appointment with a rheumatologist is in December, so hopefully, we can get things going in the right direction.

Sonny-I’ve got some time, so I’ll try some experimenting. 64 oz. of water every 4 hrs!?!?!? Ewww. This is going to sound bizarre, but the taste of water gives me the creeps. Thanks gonna be harder than not sugaring the cr*p out of my coffee! Big Grin

Junk Collector-thanks for the heads up about the berries. That’s doable. Cherries too. I love raw fruits and veges, but since Donnie doesn’t eat them, I don’t think to go through that area except if I want a salad or something. Are there any pure juices that are acceptable? Juices might be a good substitute for coffee.

I tried the OTC cocktails in various combinations to see if they eased the screaming. They didn’t, so I don’t bother taking any of them for that particular problem anymore. No point adding liver failure to the list! Smile

Norahs-That’s some interesting reading and I kept getting side tracked into other areas which raised even more questions about things (possibly symptoms) that I never thought too much about-like the 4th bullet on the list-fatigue, fever, weight loss (of course I’m not really going to complain about that!) But there are days that I’m just wiped out and other days when I’ll have a very low grade fever. I just figured I was lazy and maybe catching a cold that never came. Interesting. One of the side things I looked at mentioned dry mouth (which is why I starting chewing the Smarties at work) I don’t wear my contacts because my eyes are too dry (which they have been for years) Maybe it’s something, maybe it isn’t. I just figured it was dehydration from too much coffee, not enough water. I can see I’m going to have to make a list or I’ll never be able to keep track of what I need to ask/tell when I go to Nashville.

Joy-Thanks for the additional info on alternative sweeteners. Yeah, ya gotta have sweet tea!

Donna-the last time I had a regular panel run, they tested thyroid and it was fine. It was a couple of years ago though and I’m thinking it might be a good idea to have the standard stuff run again before I go to Nashville just so the standard health situation will be current. Ya never know what’s gonna creep up on you over time!

Thanks y’all for your input, experiences, suggestions, and advice. You’ve given me lots of things to think about and research and some changes I can make to try to relieve some of my own issues. Looks like I’m gonna be busy! I worked today and it went ok. I can deal with some limp and some aches and pains as long as it doesn’t get as bad as it was a few weeks ago. Maybe the cortisone will hold out ok. Either way, I imagine I’ll live! Big Grin

You guys rock!

Posts: 4031 | Location: West TN, Zone 7a | Registered: Jan 05, 2007Reply With QuoteReport This Post
Picture of Mary Ruth
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sorry to hear you are having problems.
FIRST: get diagnosis, otherwise all remedies won't work.

Start a diary of your symptoms and diet (include when you have a cigarette, gum, everything) Once you see what you 'actually' eat and do each day, you might have clues, at least something to tell a specialist. Also, take a basal temp ( ) each morning and other times during the day, record data. Check your BP whenever you can and record.

This will give you a realistic list of CLUES as to what you are doing to yourself each day that you no longer notice. And something to show the doctor when you go (specialist, because you have done the regular doctor already).

This is a realistic approach and you won't be compiling more symptoms on top of what you have (such as increasing toxins and now original symptoms are masked and confusing).

EXAMPLE: of confusing data, you have a puddle of water with dirt at the bottom, you are looking for something you dropped in it (a ring).. can't see it, BUT, you stir the water and now the water is muddy, meaning you now have 2 obstacles to find your dropped ring, muddy water AND the mud on the bottom now swirling around the water.
... heard that once to make me visualize how we can mask or confuse bodily pains and systems by muddying the water (symbolically).

BTW Cortisone is a good temporary fix, But it also masks other symptoms and changes blood work, such as sugar levels and other signals in your body.

Good luck in your search, I hope you get answers!

64 oz of water in 4 hrs sounds excessive to me, especially when you do not know what your diagnosis is. If you want to do a 'cleansing' then read up on it and follow an approved program for it, loosening toxins adds to discomfort including aches and pain and general tiredness and feeling sick.
Posts: 9818 | Location: East Space Coast, Florida zone 9B | Registered: Feb 11, 2003Reply With QuoteReport This Post
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I am sorry to hear that you are having such difficulties right now.You've always had such a "can-do" attitude that it must be frustrating. I hope you find the right answers and help.

There are additional and specific tests to perform when the initial test comes back positive for RA markers. There can be false positives and then even further testing is needed.

Here is a link for you to the RA

Good luck on your journey and know that we care.

~Like sands through the hourglass
~So are the days of our lives
Posts: 9517 | Registered: Oct 09, 2008Reply With QuoteReport This Post
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The blood tests determined that it wasn’t Lupus, that I was vitamin D deficient (what’s that about since I spend all my extra time outside!???) but that the Rheumatoid results weren’t favorable. They didn’t specify what that meant and scheduled an appointment with a specialist at Vanderbilt for further testing. The first appointment available is mid-December.

Bella, I'm very sorry you are experiencing these symptoms and please know like the others I care. You have received some very good advice from others and all I will add is to not take the Vitamin D deficiency lightly. It may be an underlying factor in some of your symptoms. Like you I couldn't understand why someone as active as myself and loved being outside could be deficient in Vitamin D but I was and began taking daily vitamins until it was at a safe level. I won't go into detail but do some internet research on medical sites that you trust. You will be enlightened!! I was !!

Between now and your appointment...

Keep a daily journal like Mary Ruth suggests. Write EVERYTHING down no matter how insignificant you may think it is.

Try to recall anything that has happened since these symptoms have started, e.g., falls or mis-steps, bug bites e.g., ticks, spiders?

You may even want to call ahead and have the physician's office e-mail or fax to you forms that will need to be completed the day of your appointment. Certainly a medical history questionnaire will need to be completed and it's so much easier to complete this before the day of your appointment. Also, make sure to carry a notepad with questions you want to ask your doctor. After having to wait this long for an appointment you surely want it to be a beneficial one!
Posts: 2316 | Location: Coastal Plain Region ~~ Georgia ~~ Zone 8b | Registered: Sep 18, 2002Reply With QuoteReport This Post
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I need to correct my comment.. I should have said"" 64oz. of pure water per day ""- NOT per hour..

again I am sending healing thoughts and good wishes to you Bella.
Posts: 10043 | Location: NC ~zone 7B | Registered: Jun 23, 2008Reply With QuoteReport This Post
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Bella- sorry to hear about you having all this wrong with you. Apparently you do not like the taste of water, I don't either so I ad a few drops of 'real lemon' to my mug of water and for me that works. Have you tried using honey to sweeter your tea/coffee? if you do this try using local 'grown/made' honey,that is suppose to help with allergy's so it may help other things.

Please keep us updated.

Posts: 1806 | Registered: Jul 17, 2006Reply With QuoteReport This Post
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Bella, you might also want to check into CHRONIC Lyme Disease, from what I remember hearing about it, it can have very similar symptoms.
Posts: 643 | Registered: Oct 14, 2005Reply With QuoteReport This Post
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Some info from the Mayo Clinic regarding Lyme Disease:
Posts: 1025 | Location: Florida | Registered: Aug 22, 2003Reply With QuoteReport This Post
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Originally posted by Lubecker:
Bella, you might also want to check into CHRONIC Lyme Disease, from what I remember hearing about it, it can have very similar symptoms.

Good point. I have a sister-in-law with Lyme disease and her symptoms are all over the place... most doctors won't test for it, nor get involved... but if it turns out to be that... don't give up!!! Every tick bite (I found) that was discovered on my kids or myself was recorded on our calendar... nowadays you can go for a shot or medication as soon as discovering!

About vitamin D, I had a reading of 17 (not good) for my Vitamin D!!! No reason except I did have my Gallbladder out a couple of years ago, and that seems to inhibit the absorption of D. Today I went to the doctor and my inexpensive prescription supplements have brought it up to 48 average now... (from the 17 rating, my doctor is pleased, and so am I!) in a few short months! I was in a boot and not outside much and now that I am more active and out of doors ALONG with the supplements, I am relieved that situation is corrected. I am soon to be 65 and as we age our numbers and blood tests show fluctuations and changes more quickly.
Posts: 9818 | Location: East Space Coast, Florida zone 9B | Registered: Feb 11, 2003Reply With QuoteReport This Post
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Bless your heart. You are waaaayyyy too young to have this kind of pain and achiness. Even if you were older there would be a reason for your pain.

You have great advice here. Keep searching and be persistent. There must be answers out there somewhere. I can't even imagine how you feel, dealing with this every day.
Posts: 2159 | Location: Oregon | Registered: Dec 29, 2007Reply With QuoteReport This Post
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I can't begin to tell you how sad I am for you. It seems so unfair that someone who loves to do projects and renovation and who has someone with a like passion have to suffer at what I consider a prime time of your life.

When I first started reading, my brain was screaming Lupus. However, I see that has been ruled out. I have an immune disorder (CREST) similar to but not nearly as disabling as Lupus. It began with swollen, painful joints, acid reflux that kept me awake at night and Raynaud's syndrome.

Ask to be tested for Graves disease too. I know that many women develop symptoms at about your age. I am praying that you find answers and treatment that keeps you not just comfortable but active.

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Posts: 1645 | Location: West Virginia | Registered: Apr 23, 2004Reply With QuoteReport This Post
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Hope you are FEELING better!

So sorry you have those medical issues. When people post on the board, I never think of how hard it might be for them to do so!
I hope you continue to be active and comfortable! Thanks for sharing with us!

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Posts: 9818 | Location: East Space Coast, Florida zone 9B | Registered: Feb 11, 2003Reply With QuoteReport This Post
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Bella what you describe is a lot of what I have been dealing with over the last several years. I have fibromyalgea. When I have a flare up I can barely move. Every day I am in pain somewhere on my body. I sometimes even have pain in my chest but it is the fibro. There are days my back will go out and I can barely walk just to get to the bathroom. Bumping my hand on something is excruciating because they are already so painful. I can be fine one minute and the next something happens and I can barely walk because of the pain. There are a lot more symptoms and not everyone has all of them.

There are treatments to help but no cure. Some medicines cause more problems and side effects. One med I was put on damaged my liver after 2 years of taking it. I refuse to take meds now unless I am just in so much pain I can barely stand it and then I will ask for a 10 day supply of muscle relaxers and a pain med. Usually he'll give me a steroid shot too. The rest of the time I take tylenol arthritis. Aleve helps more than tylenol but I have stomach problems which often will go along with fibro and so I can't take any aspirin.

Sleep deprivation often goes along with it but the prescription meds are to strong and cause me to be loopy and out of it during the day so I have found that I can take Equate sleep aid from Walmart and so much better with it and it doesn't cause bad dreams and such like the other stuff I've tried.

Also with the stomach issues the doctor had me taking metamucil which gagged me. I found a something from the health store called psyllium husks which works much better and doesn't cause the stomach cramps. I have my sis who has ulcerative colitis taking it now and it has helped her better than what the doctor had her on and she isn't having as much pain with it.

If it is fibro please be careful of what they put you on. A lot of the meds have more side effects that can cause damage. Fibro is a very painful way to live and trust me when I say people are so bad to judge because of the way fibro works. Fine one day and barely able to walk the next. If people only realized how much pain I am in constantly even though I look fine outwardly. It is miserable.

I am what I am because He is I AM!!!

Posts: 5717 | Registered: Jun 06, 2003Reply With QuoteReport This Post
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Sorry, I didn't mean to abandon you ladies. When things are manageable, I have to try to get to the things I don't get done when things are uncomfortable and I get tired of hearing myself whine or even thinking about this stuff.

MR-This post has introduced tons of things to think about and to try! I plan to print it out, make some kind of outline for the various suggestions, and try to decide which ones I can implement to help manage discomfort without changing the base problem so that I don't change my usual chemical make-up so that they don't alter the test results when I go to the specialist. The cortisone is one of the things that will alter the results so even though it does provide temporary relief, it changes in the inflammation factors in the bloodstream.

I totally understand about the muddy water example. My "real" job before decorating and being the local hardware chic was troubleshooting technology problems and I find that the same troubleshooting theories apply to working out the solutions to all problems and there's a process and each thing you do is likely to have repercussions to the initial symptoms so you have to go slowly, document what you've done, and reassess value every time you make a change so you can keep track of what change produced each result, whether that result was desirable, and what problems or potential problems to other things that change may make. It's a slow and complicated process, but necessary. I use it in solving pretty much all of life's problems. Comes in handy.

You're right about establishing a baseline of daily intakes and symptoms. I've considered making and photographing which specific area is causing trouble, what day and time of day it was just for documentation as it's often just sections of a particular joint. Monday, I worked on a couple non-strenuous projects and was moving around for most of the day. Around 5:00 out of the blue, one shoulder and one finger wouldn't move without screaming, and the outside of one knee, part of the bottom of my foot, and a couple of toes were achy. Took about 5 minutes to go from happy to miserable.

The weird thing is that RA is traditionally supposed to affect the small joints. I rarely have trouble with those. It's the big joints that are problematic 90+% of the time. I'm very confused.

The other day I was thinking about the health issues you've been dealing with for the last couple of years. I'm glad you popped in and hoe you are recovering from some of your issues. Like me, you were always a busy person and a DIYer. I know the downtime can be maddening!

Rose-Thanks for the link. Looks like there's tins if info there. While I'm probably thinking about it way too much, I suspect I may not have the standard RA, but maybe something similar (because of the large joints thing.) It would be helpful to know about what other categories are out there, their symptoms, etc. At least if some of these terms come up during my appointment, I may have some knowledge of them!

Georgia-I Googled the effects of vitamin D deficiency as soon as I hung up with the nurse and discovered that joint pain was the result. I started taking the dosage she recommended immediately.

Vanderbilt was kind enough to mail the forms I need within a day of the PC making the appointment. I was tickled since I don't have half the info they usually want with me unless I drag around a filing cabinet, and they always say to be there 10 minutes early for paperwork that takes half an hour to complete, so even if you're way early, you always end up rushing to get it finished before your appointment time. Woo Hoo! Somebody finally gets it!

Sonny-THANK GOODNESS! That, I can probably do. Big Grin

Wanda-I haven't tried honey in my coffee, but it sure is good on a slice of toast! We had a young guy that worked with us and his family made honey. It was put the store bought stuff to shame! He kept us in honey the whole time he was there. I don't have allergies, but had heard that since it was made from our local plants that it was supposed to be good for helping people resist allergies area pollens. He's off in the Marines now. Hope he is safe and well.

Lubecker & Spanish Revival-Someone mentioned Lyme Disease. After a quick look at it, I appears that you can have this for a lifetime. I grew up in upstate NY among the farms and woods, etc. While I don't remember that bullseye thing, we were around ticks and stuff, so it is possible that I may have been bitten. What makes me wonder is that I've always had aching legs ever since I can remember. Of course, this was about 10 years prior to them discovering Lyme disease that the aching started. Maybe it's something, maybe it's nothing, but I believe I'll have it checked out just the same.

MR-How did your SIL finally get tested? Who was willing to do it? Given where we grew up and some of the horrible conditions of some of the places we lived in, I'd like to have that done.

Always-Thanks! We'll figure it out I'm sure and hopefully things will be back to normal. I just hate the waiting, but in the meantime, I have time to ask questions and do some research so that when the time comes, hopefully, I'll have better answers than I would otherwise.

Busyjo-I'll have to look into the things you mentioned. About 10 years ago, I discovered that life could not be lived without Prilosec. Even with a modified diet, it never went away. I'm not familiar with Raynaud's or Graves, so I'll add them to my research list. I really have about a million miserable things that I just figured were part of life, but like pieces in a puzzle, there may be parts of them that help create a whole, manageable picture. I hate that you're having issues too and am glad you are able to still get up and go and have a little fun!

Lisa-Yes, some of your symptoms sound an awful lot like some of mine. Other than the cortisone that my PC prescribed a couple of weeks ago, I haven't found anything that even begins to provide any relief. Nothing over the counter works and we have a regular stock of Soma around here, but they are totally ineffective. They knock DH out, but do nothing for me. I do take a couple at night or I would never sleep which is why I keep having them prescribed. I prefer Ambien which I haven't taken in years, but they won't prescribe that long term. I've heard crazy stories about that, but I was single when I took them last, so there were no witnesses to the crazy stuff I might have done while I thought I was asleep! The OTC sleep aids make me groggy in the morning so I try to avoid them on days I have to work.

I hear ya about people possibly thinking you're crazy. I'm always afraid the workplace thinks I'm making it up. Most days I limp, some days I don't. Other days, I almost have to roll out of the car and a snail would win a race to the door. It usually eases up so that I'm back to just a limp by about 9:00 and sometimes it totally goes away and there's no limping at all within the same day. They might be more suspicious about it except that I don't call in sick and don't shirk my responsibilities. It would be nice to be back to normal though!

When I posted this, I was hoping to get some info on various things-which I have tons of, thanks much. What I wasn't expecting was to find that so many of us deal with all of this stuff every day! It makes you realize that you might have an idea about people, but there are all these trials in the background that we just have no idea about. This has always been a board with great people, but now, as I see it is also a board with very strong people as well. I find it a shame that so many good people have to try to manage their regular lives in addition to all this pain and disease. I admire everyone that can do it as well as this group!

Thank you so much for all the help, advice, experience, and resources you all have offered. This is an extraordinary group of people we have here and I truly mean that. Bless you!

Posts: 4031 | Location: West TN, Zone 7a | Registered: Jan 05, 2007Reply With QuoteReport This Post
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So sorry, Christy, that you are having pain. I know my husband takes Glucosamen Controtin (I am not spelling it right) for his pain. It takes awhile to work ... maybe 10 days .. if he stops taking it, in a day he is hurting again. He has pain in his neck, shoulders, back, hips and legs. I can sympathize with you and I surely hope you can find something that helps.

love life
Posts: 1571 | Location: omaha, ne U.S.A. | Registered: Sep 18, 2002Reply With QuoteReport This Post
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That was one of the most well written responses I have read in a long time. You really have depth of appreciation. I really hope and pray you find your answers!

My SIL: I didn't post details because they are confusing and I didn't want to scare you. Turns out she has two or 3 types of Lyme. From Upstate NY where she has lived for many years! Ticks are very bad in Connecticut, and upstate NY. She had a horrible time getting diagnosed. Then, she got another tic bite with red circle a couple of years ago to add to her already 2 previous types, turns out she has 3 types of Lyme. One attacks joints, one attacks muscles and nerves and another organs... I will just say she is doing OK now, she got some treatment, but is not going to get better, but it is being managed. She is full of life... and posts on FB daily, she keeps up with all her friends and has an upbeat strong personality. She grew up around Manhattan, so she is strong...

One of the reasons upstate NY has a problem is that no spraying to RID the area of the ticks was ever done... or recognized as a problem... If time comes you find you need more info about this... I will connect you with her.

DH loves his Move Free
And I make sure he does not run out, Sam's has them for more pills and less money...

When you discover more about your condition, Please let us know! I am rooting for you!
Thanks for the kind words, and topics from you are NEVER OT's!


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Posts: 9818 | Location: East Space Coast, Florida zone 9B | Registered: Feb 11, 2003Reply With QuoteReport This Post
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Thinking of you and hope you are doing OK!

Bumping so this thread can stay near top!

Posts: 9818 | Location: East Space Coast, Florida zone 9B | Registered: Feb 11, 2003Reply With QuoteReport This Post
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Christie - I rarely have time to check in here at the boards and was very sorry to read about your current medical issues when I stopped in this evening to catch up. I have no personal experience with RA, but found this website with comprehensive information that I thought might be of interest to you.

It appears to address most of the issues you've mentioned. Its unfortunate that you weren't able to get an earlier appointment with the specialist, but I am sure that the Vanderbilt docs will be top-notch so you will be in good hands once you get there. In the meantime, I hope your symptoms subside. Take care.
Posts: 4089 | Location: Boothwyn, PA | Registered: Aug 20, 2006Reply With QuoteReport This Post
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Dear Christie- I know what you are going through. 5 years ago I experienced almost the same symptoms. Then I read a book called the THE CHINA STUDY and was convinced that a high animal protein diet was the cause of a lot of our auto-immune and heart diseases. My body was in an inflammatory state. To bring down the inflammation I drank 32oz of organic vegetable juice every day for 6 months and ate no meat cheese or fish. I am now vegetarian and have been pain free for 1 year. It wasn't easy, but I can now enjoy life, grandchildren included.
Posts: 8 | Registered: Oct 25, 2004Reply With QuoteReport This Post
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I am hoping that you are having some good days and pray that the specialist you are being sent to is the exact one you need to get the treatment you need. Please come post a new thread when you get some information.
Posts: 1645 | Location: West Virginia | Registered: Apr 23, 2004Reply With QuoteReport This Post
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