OT health questions? arthritis or lupus?

Just looking for some input. I was in such pain last week I was not functioning at all. Started in my hip but has spread through most of my body. I thought it was just joint pain but dr did some poking and prodding and says there is some muscle involvement as well. So I started looking at it looks like lupus. She has sent me for blood and xrays. But it will be till 27th till I get into to see her again to get the results. So there has to be people out there with these things.

What were your symptoms? How did you manage the pain? What worked and what made it worse. I've been reading a lot on the net but would prefer personal stories. I can't find anything that makes it worse although I suspect cold weather. This started last year but at the time I had just conceived. So dr's thought it was all the hormones and it did pass after

3 months. Which meant all of december, january, and february I was in pain. Now it's turning out to be the same thing again this year. I can't find anything about lupus that says it can be made worse by cold weather.

Thanx for any in put you can give me. Take Care Joanna snipped-for-privacy@QUILTshaw.ca remove QUILT to reply

Reply to
Joanna
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Don't self diagnose! Wait for the results... Symptoms often overlap, and there's no point in buying extra trouble. I get pain like that with fibro.

Reply to
Kate XXXXXX

Ya I'm hoping it's not fibro too. I was diagnosed with fibro back in

1999. But that was cuz my dim witted dr did xrays and said nope you don't arthritis. He then preceded to blow me off. Didn't believe a word I said. The diagnosis actually came from my chiropractor but because I was desperate. Too many of us have been down that road. This dr is doing everything she can to get to the bottom of it. I never believed the diagnoses back in 1999 because hardly no testing was done to rule everything else out, he just dismissed me.

So that's why I come here. I'm not look> Joanna wrote:

Reply to
Joanna

Just want you to keep an open mind. Believe me, if it *is* something like fibro, it's a hell of a lot better than Lupus. You CAN live with it. And the more you keep doing the better.

For the pain and inflamation I take arthrotec and ibuprofen and/or paracetamol. For general joint care I take glucosamine and chondroitin.

For general stiffness and muscle aches, I go swimming. Keeping the weight down and the exercise going is a huge help in both limiting the general degeneration and the pain. You can't hurt yourself or do the joints any damage with fibro if you do low impact exercise like swimming and walking: no running, no hard gym stuff! Keep it gentle, but keep fit, keep the weight down, and you will have a lot more energy and stamina to cope with the flares. And I try to exercise regularly even when the pain is at its worst: that's when you benefit from it most!

Yes, it's hard. I haven't been swimming for about 3 months, and I'm at my lowest ebb for several years. Getting back in the pool will be awful to start with, but I'll soon be back in trim and moving! Yay! Just get me to the pool!

Reply to
Kate XXXXXX

Reply to
Jennifer in Ottawa

Joanna, please don't jump to conclusions about a diagnosis. Your doctor is following a very responsible protocol of blood work and x- rays and although you are in discomfort, it's really not a long time to wait. Typically, lupus is diagnosed on the basis of much, much more than joint and muscle pain. And don't self-medicate beyond aspirin or acetaminophen. Self-medication causes more problems than it fixes.

I can tell you a few 'facts' that I know from personal experience and from research: If you have fibro, you will feel infinitely better if you can exercise. If you have lupus or a similar autoimmune disease you may have a hard time maintaining exercise. (I have both, lucky me.) Fibro is treated with non-steroidal anti-inflammants, muscle relaxers and sometimes lower level prescription pain medications. Steroids and other immune system suppressants will not help fibro but will keep lupus and other autoimmune diseases in check. (I know that fibro is an autoimmune disease, but it it not in the same category as the ones that try to kill you. It can cause terrible disability, but it generally doesn't kill a person.) There are many, many causes of joint pain and muscle pain. Give your doctor time to do a thorough work-up and don't make assumptions.

If you want to know how I was diagnosed, first with lupus and then with Sjogren's Syndrome, I will give you a quick breakdown. (at this point, anybody who isn't Joanna probably will want to go look at Polly's gorgeous quilt photos and not read any more here.)

By the time I was 23, I realized that my face broke into big horrible sores anytime I was out in the sun. These were not your normal 'zits' and sometimes they would go on for more than a month. I began having serious lung infections every winter, sometimes twice or more. I attributed this to living in the dirty air of Phoenix. Within a couple years, I was having a hard time with outdoor activities. Hiking and backpacking became agonizing. I would run up a fever within the first half day and then be in big pain and very, very sick for days after returning from a trip. About the same time my life-long bladder problems became more pronounced. Much pain. Then I had my first son. I was sick almost all the time after he was born, which I attributed to the difficult birth and big blood loss I suffered and the exhaustion of a baby who never slept. More lung infections, sinus infections, bladder problems. Baby number two. Same general thing with added misery of joint pain from time to time. Chalked it up to heavy baby. Woke up one morning and my vision was tilting and running all over the place. I couldn't stand up without help for almost a week. Dr. couldn't figure out why. When oldest son was 6, woke up one morning urinating blood. Terrified doctor sent me to a urologist who diagnosed interstitial cystitis. Explained a lot for my entire life. Lung infections started happening in summer, as did ear infections. Lost two teeth to horrible pain that dentist couldn't fix. One winter had ruptured ear drum. Pneumonia twice that winter. This was the general state of things for years. I got sick every vacation on the first day and spent the whole vacation moaning with a high fever and hurting. Then we moved to our current location. I did pretty well until we'd been here three years and then started to have big problems -- exhaustion (sleeping 18 or more hours a day, fell asleep sitting at supper table), fevers, bladder, and a new problem -- confusion. Over six months I lost all my contracts (I wrote for a living) and became completely unable to work. My doctor moved away and I had to see a new doctor. I told him my problems, he took blood, prescribed anti- depressants and told me to come back in a month. Fast forward two months and I was diagnosed "out of the blue" with lupus. Biopsies later confirmed that I also have Sjogren's Syndrome, which is the disease process that has attacked the nerves in my face and head.

Ok, you see what happened was I was really sick for years and nobody put it together until I saw a doctor whose grandmother died of lupus. He was very aware of the disease and autoimmune diseases in general.

Generalized joint pain and muscle pain can be many, many things. Most of those things will not make your life a living hell. So be hopeful. If your health is generally good then there is no reason to assume you have lupus. I can tell you now that lupus does not allow a woman's body to have babies easily. The fact that you still have functioning kidneys and no fertility issues (think repeated miscarriages) means you are not likely to have lupus. I will pray you don't. I wouldn't wish this on my worst enemy and certainly don't want a friend to have it.

Hugs and hopes for good health, Sunny

Reply to
Sunny

On the other hand scleroderma is often made worse by cold weather.

One is as bad as the other, I hope it turns out to be neither.

----------------------------------------------------------------------------- e m a i l : j a c k @ c a m p i n . m e . u k Jack Campin, 11 Third Street, Newtongrange, Midlothian EH22 4PU, Scotland mobile 07800 739 557 Twitter: JackCampin

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Jack Campin - bogus address

Joanna Please do not self-diagnose, do not self-medicate. Let your doctor, who seems to want to get to the root of all this, do his/her course of tests and evaluations to get to a diagnosis.

Systemic lupus is known as a "constellation" disease. It has several different types and degrees of symptoms, and how it manifests in one person may not be duplicated exactly in someone else. How it may affect one person may be very different in someone else.

I was diagnosed with Systemic Lupus in 1988. It took about six months of testing to narrow it all down to an accurate diagnosis. The involvements for me are skin, joints, lungs, and kidneys. I wouldn't wish it on anyone.

G> Just looking for some input. I was in such pain last week I was not

Reply to
Ginger in CA

Hey, now. Don't think of me as just a pretty face. I see something in Sunny's post that I don't want anyone to miss. She mentions that her doctor moved away and then she got a correct diagnosis. Both DH and I somehow lived a long, long time with a wrong diagnosis and treatment for our ills. My doctor died and the new guy just immediately solved my problems. A trip to ER where a brilliant very young intern was on duty resolved DH errors in treatment. Conclusion: nothing wrong with seeking a 2nd opinion. Nothing at all. And yes. The striped quilt, now on point and surrounded with orange sherbet and vanilla is really pretty. Polly

Reply to
Polly Esther

Thanx Kate. I know exercise is good. Dr even said anything low impact but keep moving. I don't think this is a choice though. I have a 6 yr old and a nearly 3 yr old. Not happy with my dr right now concerning weight. I had baby in Sept and still have not lost the weight. In fact one weeks after baby I weighed less then I do now. After I went into pre-eclamsia and gained weight like crazy. Dr says it's my eating. I say no friging way. Since I was 16yrs old I've always weighed between

165-175lbs. Unless pregnant of course. But even after babies I always lost the weight within 1-1.5 months at the most. It's almost 5 months now and I"m 196lbs on my scale, Dr's scale says 206lbs. I should also mention I have low thyroid. But every test has come back fine for that. So we have some issues to discuss. But I always find we run out of time in our appts. Even when I tell the nurses to book me extra time. So we'll see. It will just take time to get it under control and feeling better all the way around. Thanx again for your input. I appreciate it. Take Care Joanna
Reply to
Joanna

I'm not self medicating. The medications I do have were dr prescribed. The pain meds I have though are for migraine but dr is aware I'm taking them for the joint pain as well. She said it's fine till we find out what it is. You really can't self medicate here. You need a prescription for most medication. Unless you want regular tyenol or something but that's pretty much like sucking on a lolly pop so I wouldn't waste my time or my liver.

Whether this is arthritis, lupus or fibro I know there are people on this list with it. Which means someone out there has a little more experience than me. So I just want to hear about it and what works, what doesn't. Also what tests I should or shouldn't have if you know of any. Coping techniques. Take Care joanna

Reply to
Joanna

Coping techniques (and I bet others will say the same): meditation, prayer, calming activities (think stitching and petting fabric), reading, some days just plain crying, calling a friend, hot cup of tea, petting my dog, staying calm.

Tests -- oh my. So many. And if you think your doctor is not doing what should be done then go to a different doctor. For 20 years doctors happily ignored my symptoms, treating each one as a brand new and unconnected event. Find yourself an internist who is a diagnostician.

Sunny

Reply to
Sunny

Thanx Sunny

I appreciate your sharing. I know lupus normally isn't diagnosed after symptoms from a month or two. But I've been having pain on and off for years. Some years were great others were hell. I'ld just take pain meds and go about life the best I could. However it's worse now I can no longer fake it and continue with my day. I'm hoping it's not lupus. I've had 8 babies but the last one did me in I think. I have not had a healthy day yet. So we'll see what the dr says. Take Care Joanna

Reply to
Joanna

Reply to
Joanna

Reply to
Joanna

I was over weight for years. When I finally stepped on the scales I was

213lbs. This did NOT help at all. I shed (not 'lost'. I deliberately shed it!) 70lbs and was much happier. It helped enormously that I was no longer stressing the joints with the excess weight and exercising regularly.

This past year a normal and boring tendency to fluid retention has gone haywire. I've put on about 20 lbs, despite sticking rigerously to the WW diet and keeping up the exercise until about 3 months ago (several factors combined and things fell to bits). Now I'm trying the Waterfall Diet. It's a slow start, but I'm getting there.

You already know you have a tendency to verge on the underactive thyroid. Be aware that what counts in the 'normal' range can be underactive *for you*. Not everytone is the same. If you need a second (or specialist) opinion on this, ask for one.

BOTH things have a tendency to pile the weight on despite careful attention do diet, portion size, and an active lifestyle. 'Wight' is NOT just about being fat. And there are many causes for fluid retention.

Fibro attacks soft tissue, specifically muscle attachment points and ligaments. It also manifests with symptoms like Chronic Faigue Syndrome. Some days specific and discete places hurt, others you get a general malaise and feel like you have flu (without the runny nose!). But it's different for everyone. The thing both my GP and my rheumatologist are adamant about is keeping the exercise going. From experience, I'd say the less you do, the less you CAN do, and the more you do, the better it gets UP TO A POINT. You really don't want to over-do it! So start gently... Build up. And keep going even when it hurts - especially when it hurts! Yes, take it a little more gently (when I'm fit and having an attack I do maybe 40 lengths in the pool rather than the 64 that get me the mile), and go little and often rather than a big push once a week. In between the swimming sessions I try to walk and do stretching exercises.

And do take exercise: even rushing about looking after two kids doesn't give you the sustained periods of exercise needed to raise the heartbeat enough for aerobic exercise. Put aside a period of time every 2-3 days for your exercise. Make it happen. If that means the hubby doing the school run a couple of times a week, well, as Himself said, they're dad's kids as much as mum's!

Right. Must go - sewing to do and customers coming!

Reply to
Kate XXXXXX

You mention swelling. Well the past couple of weeks I have been retaining water. Can't find any cause I'm aware of. What do you do for that?

I'll admit right now I hardly touch water. I start my day with tea and drink about 1 liter of pop a day. Tea lots of it. 1 big glass of water at night when I take my vitamins. Slowing I"m switching this as I used to drink 2 liters of pop a day when I smoked. So I quit smoking in Dec. But I took 1/2 a water pill the other day and hardly nothing. It's hard for me to take them because I'm in and out of the house with school and kids. So I usually wait till the weekend when hubby is home and we don't need to go anywhere. Thanx Joanna

Reply to
Joanna

I'm trying the Waterfal Diet.

That doesn't sound good. What you need to do is discover the underlying cause amd eliminate that, rather than treat the symptoms with drugs. That's what the diet does. It takes a lot of organizing to start with, and careful planning. Eating out can be interesting!

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Take a read of Linda's site and try to get hold of the book. I got mine pre-loved. It's a slow start, but once I get everything properly sorted, I should see an improvement. It isn't going to help with the inflammation from a fibro flare, but if I eliminate the water retention, it will surely improve everything else!

Reply to
Kate XXXXXX

I came off the waterfall diet over Christmas but have now gone back on it having finished off the Christmas goodies and ended up feeling bloated, puffy ankles again and indigestion! It is amazing how many things contain wheat flour (even some Oat cereals!). I now have a supply of soup, cooked chicken, cooked brown rice, salad and humous in the fridge, together with some wheatfree bread which is ok toasted. These are for lunch instead of sandwiches. If I am cold I may shove rice, chicken and a few frozen vegs in the microwave together with a teaspoon of curry paste. I made a gorgeous chicken and mushroom casserole last week using a tub of Tomato and Basil sauce from the co-op that I had frozen down for vegan daughter over Christmas and hadn't used. Added just a smidgeon of curry paste to that (so little you couldn't really taste it but it really lifted the flavour)and a little water which evaporated during cooking.

I don't find eating out to be too much of a problem. I avoid fried things as much as possible, and also creamy sauces, but most places have chicken or fish, and potatoes and vegs are ok. Dessert can be a problem unless there is a fruit salad or similar, but I tend to go for a starter instead - soup or a salady thing, or I just have a fruit tea while the others are eating their creamy desserts.

I carry fruit tea bags with me as most places only have herb teas as an option and I can't stand those, so I just ask for hot water (having asked if they have fruit teas of course - then they can't object to my teabag).

I also give myself a few little treats to make up for the things I can't have, like an out of season soft fruit or some prawns or smoked salmon instead of chicken for lunch. If I'm not paying for coffee in restaurants or buying chocolate or cheese I can justify it to myself and it helps the withdrawal symptoms!

Sally at the Seaside~~~~~~~~~~~~~uk

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Kate XXXXXX wrote:

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Reply to
Sally Swindells

I didn't wait until all the goodies were gone. The Christmas cakes and puds are gluten free anyway, and Himself and the GMNT are quite capable of evaporating them without my help!

90% of my cooking is home made and low fat and low salt anyway, I haven't eaten red meat in quantity for years, and almost everything elase on the regime I love. I do eschew the soya milk and tofu! Bleargh! Rice Dream with calcium is an OK sub for milk.

I've opted for the fruit salad for years too because of the other dietary restrictions. Like you, fruit tea is good, most herb teas are horrid (though I do have a Morrocan mint and rose that is rather fine).

I shall have to do that! I have a box at a friends house so I can have a cuppa while there.

Good tips! :)

Hehehehe... The GMNT has already complained that I'm reserving the 'special nommy noms' just for me! I asked if he's like to give up chocolate and Coke and cake and have my noms instead. He gave me that LOOK over the top of his specs.

Reply to
Kate XXXXXX

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