Rheumatoid Arthritis (RA)

[bluebird]

Wow Elizabeth!!! Keep me posted, okay?

We have talked about using biologicals on dd but since she is only 16..... My cousin is using them. I need to check with her and see how they are working for her.

[ewriggs]

With the biologics (Humira, Embrel, etc) **always** be guided by your MD - preferably a board-certified rheumatologist. They are very effective, BUT they have lots of side effects and can be dangerous. There is a reason drugs are *prescription-only.* They have side effects and only an MD familiar with your case and the effects of the drugs should decide whether they are good for you. (Or your DD.)

As my RA is definitely related to my genetics (mother had it, aunt had it, grandmother had gouty arthritis) as well as probably related to the severe infectious mono I had (Epstein-Barr virus) back when, my doc feels the need to get out the "big guns" in fairly hefty doses. But that isn't the case for all.

Interestingly enough, I have seen a number of cases of JRA spontaneously go into remission in the early teens and not trouble the person for 10 to 40 years. There are also cases of adult-onset RA spontaneously going into remission, too. My MIL had RA that lasted about 2 years, led to mildly deformed hand joints, and then went away. Her daughter, my SIL, was not so fortunate, however, and is severely affected. I'm determined that if mine does not go into remission, however, that I will maintain my mobility as long and as well as humanly possible. I won't give up!

And I encourage all y'all "out there" to fight your arthritis (and fibro) every day and keep going and active by moving, by keeping a positive attitude, by doing intensive PT / OT, using whatever habilitative aids that you need. I'm hoping to get Dragon Naturally Speaking trained well enough to be able to rely on it if my hands give out for typing my reports.

So encourage your DD to keep on with her dancing and other activities!

Cheerio!
Elizabeth

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~*~ Fall seven times, stand up eight. ~*~
~*~ Japanese Proverb ~*~
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[ellenmelon]

Elizabeth, I don't have RA but I am really glad you started this thread. Is there a quick way you can outline the major differences between RA and Fibromylagia. You said that some of the symptoms were the same but maybe the onset and duration for initial diagnosis or the blood work is different?

I do hope that you, Connie's dd, and shepherdchild find more things that work and provide relief.

Thank you for posting about taking care of any suspicions right away. I am one that is prone to wait and see and if damage can be forestalled then that is good to know and might spur me to look at things sooner rather than later.

So far I am just working with occasional bouts of thumb lockup from OA. Not a biggy.

[ewriggs]

Good question Ellenmelon!

Basically, although both are considered autoimmune diseases, and both involve incredible fatigue and malaise, there are major differences.

Fibromyalgia (the name means sore fibrous tissues) involves pain in the muscles and, perhaps, tendons. It is sometimes misdiagnosed as tendonitis at the beginning. Fever is not usually a component. There is no progressive destruction of either muscles or joints, although there may be progressive pain. There are 18 points on the body that usually exhibit some tenderness. The diagnostic criteria for fibromyalgia includes the presence of at least 11 of the tender points. BUT, not every person with fibromyalgia has a full 11 tender points at any one time. They tend to come and go. I've been tracking my tender points in an attempt to figure out how it flares and ebbs. Some days I've had the full 18 tender points! But other days I've only had 1 or 2. Those are the good days!

RA does involve progressive deterioration - of the joints and the tissues that line the joints (the synovial membranes). So fibromyalgia is more muscle (although joints may ache some, too), and RA is more joint (although muscles may ache a good bit, too). Fibromyalgia does NOT involve destruction of tissues, and RA DOES involve destruction of the tissues of the joints. The fatigue involved with RA is much more intense (especially during flares), but rest is restorative, while rest does not relieve the fatigue associated with fibro.

Although pain may interrupt sleep in RA, there is no associated sleep disorder as there is in fibro.

Fibromyalgia seems to be present in a percentage of RA patients. Whether there is a causative association between them is not known at this time. I find this very interesting, however. I have had 4 diagnosed autoimmune conditions, now. Pseudotumor of the orbit, a flaring and remitting course of thrombophlebitis, fibromyalgia and RA. Autoimmune diseases seem to "run in my family," and autoimmune diseases are thought to have a genetic component.

I am rather grateful that I developed the fibro before I developed RA. I have learned to function despite pain and fatigue, so I am able to apply many of the same coping mechanisms I have used for many years with the fibro.

The pain and stiffness of the RA are much "worse" than fibro, and are different in that they are more focused in one or two places in my body. For instance, my hands are more affected, and I'm aware of severe, deep pain inside the main joints - the MCPs (the big knuckles where the fingers join the hand) and the PIPs (the knuckles between the MCPs and the end finger joints). The DIPs (the end knuckles of the fingers) are somewhat less affected. While there is symmetrical pain (both hands) one hand is usually worse than the other. Being right handed, of course, my right hand is "worse!" Wouldn't you know it! The same goes for feet - my right foot hurts more, but both feet are involved. The right knee is more swollen, tender and stiff than the left, but both knees are involved.

This is typical. But there are non-typical presentations, in which only one or two joints are involved.

Although there most often is a positive RA-factor and elevated C-reactive Protein (CRP) and Sedimentation rate (SED Rate) in RA, it is possible to have RA with negative blood work. This is called "sero-negative" RA. Many MDs don't recognize this as RA, and will treat it as "just some arthritis." More are beginning to recognize that lab work is not the final answer, however. It is the entire clinical picture. Swollen, painful joints, often low-grade afternoon fevers, and fatigue should raise suspicion that RA is present.

Please remember, though, your own doctor is the final authority when it comes to diagnosing and treating RA. If you think you may have RA, and your MD doesn't, you may want to seek a 2nd opinion from a rheumatologist. But just as all Family Practitioners are not equal, and all Internists are not equal, all Rheumatologists are not equal. There is a good reason to see a "board-certified" rheumatologist - this is a person who has had a long residency in internal medicine, specialized in the autoimmune diseases, and has been tested and certified by the American Board of internal Medicine AND has a subspecialty certification in rheumatology. This will not assure you get a doc with a wonderful bedside manner, but ensres that the doc has the knowledge - the book learning - to practice in the specialty. I hae been to 3 rheumatologists in the past 30 years. Two were great, one was an unmitigated disaster. You have to find the doc that will work best for you. The one that was a disaster for me has one of the largest practices in Atlanta, and his patients sing his praises. I can't stand him. I like the first one I went to the best, but he has since retired and died. I'm going to his son and daughter-in-law (both board-certified in rheumatology) and they are very good, compatible with my needs, and I like them very much. So I encourage people to find good, well-qualified docs that they can work with.

Well, I've gone on and on, here. I'm studying this so I can understand my own diseases, and am glad to share what I learn.

Hope this has helped some!

Cheerio!
Elizabeth

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~*~ Don't be discouraged. It's often the last key in the bunch that opens the lock. ~*~
~*~ Author Unknown ~*~
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[ewriggs]

Here are some really good references for RA of the hands:
Hand World (select "Painful conditions" then select "Rheumatoid Arthritis")
Hand Anatomy
Patient's Guide to Arthritis of the Finger Joints

You may wish to explore more of these websites. They are very good.

Cheerio!
Elizabeth

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~*~ I may not be there yet, but I'm closer than I was yesterday. ~*~
~*~ Author Unknown ~*~
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[ellenmelon]

Thank you very much Elizabeth for outlining and explaining. I think on and on is a good way to describe something that can be misinterpreted or missed.

I especially got a charge out of your MCPs, PIPs, and DIPs. I will look at my hands with those acronyms ever fixed in my brain! And thanks for the websites.

[ewriggs]

Mayo Clinic has a really good article about protecting your joints. My hand therapist told me the same things when I went to her. There are a number of principles for protecting your hand joints, and the article lists them. One of the big ones is to use the strongest joint available for a job. And example of this is not holding a coffee cup by the handle - hold the cup directly. This protects those PIPs and MCPs! Don't hold your purse by a handle with your fingers - use a purse with a longer strap and hold it on your forearm or shoulder. When I go to the pool, I use "string bags" to hold all my swim stuff. I used to hold them by the handles in one hand. Now I hold them one on each forearm, and divide the weight that way. I'm also considering getting a wheeled cart to use, but it has a handle that requires being held by my hand. I'm still thinking about that.
My thoughtful DH was concerned because I couldn't pour the coffee using the Mr. Coffee carafe - it was too heavy on my fingers and it hurt! He invested in a new coffee maker that is, I think, **perfect** for someone with arthritis in the hands. It's one that has a dispenser. I just put a cup under it and press a little tab with the side of my hand! the tall to-go cups don't fit, so I use a large coffee creamer to dispense the coffee into, and pick it up not using the handle. Morning coffee has become so much easier and less painful to make! I don't think I can mention a brand name here on the forum, but those who are interested can PM me and I'll be glad to give you the information about it!
Another thing, we are going to replace all the bathtub/shower and basin handles with ones I can push with my wrist or turn around with the side of my hand. This will help a great deal, too.
The idea of using the strongest joint possible was new to me, although I had already instinctively begun to do some adaptations that used that principle. Having that "written down" on my list of things to do by my hand therapist has made a big difference to me already! As the disease progresses, I'm sure I'll come up with other examples from my life.
Have any of you done things or made adaptations to protect smaller joints (like the MCPs, PIPs and DIPS)? Tell us here!

Cheerio!
Elizabeth

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~*~ No trees were killed in the sending of this message. However, a large number of electrons were terribly inconvenienced ~*~
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[ewriggs]

Yuckies! that "Canadian Clipper" the weather people warned about is here, temp is about 20deg, and I'm totally "locked up." RA is not exactly fully flared, but if definitely "there" at about a 6/10, but the fibro IS flared - up to about 8/10. Can't drive to get to the pool (drat it), so I'm doing stretching here at the house, wrapping up in blankets, using heating pads, drinking hot fluids, and thinking "warm" thoughts. LOL - on days like this, I really wish I had my own private masseur/masseusse. LOL!

I'm sure others out there in FC-land react to weather changes, too. What is it for you - temperature, humidity, barometric pressure, combination? For me, it seems to be a combination, although sudden changes in temperature, especially drops in temp, seem to be implicated, too.

Can't get in the shower to warm up unless someone is here. I fell a while back, and the ol' curmudgeon made me PROMISE I would only get in the shower if someone (big enough to help me get up) were in the house. The kids nextdoor are all down with flu, so they can't help out this week.

O well! worse things could happen. Guess I'll just do some research reports, then nap some more. Tylenol, take me away!

Cheerio!
Elizabeth

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~*~ Blessed are the flexible, for they shall not be bent out of shape. ~*~
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[bluebird]

Jasmine hurts worse when the wind blows. She is doing great with the cold this year. She was able to help carry in the groceries tonight. It is cold and the wind was blowing a little. She was a little sore and will need a hot bath tonight. But that is much better than she was one and two years ago.

[ewriggs]

Dear FCer's -

There haven't been any posts of late, so I'm posting a little bit more about RA.

Everyone experiences RA differently. My SIL has a severe case that has progressed because she refuses to take the medications that will stop the disease in its tracks - or at least greatly slow it down. She is pretty badly incapacitated, but she has had it for a number of years. Until her husband died a few years ago, it was progressing rather slowly, but the stress and grief of his death increased the rate at which it is progressing.

Stress can make your RA flare and progress rapidly. So can fatigue. Depression plays a role, too - not so much in how bad your disease becomes as how you are dealing with it.

A lot of "dealing" with RA involves keeping your joints as mobile as possible for as long as possible. There will be days they hurt, and you won't want to move them. On those days, I use heat to soothe them a little, and move them anyway.

Gently putting each joint through its normal range of motion about 4 times a day - 5-10 reps each - will help a lot. Don't try to "force" them, but do move them.

Some people, like my beloved late mother-in-law, have RA for a few months or a year, then it seems to go away, never to return! Others, like my own mother, have it march through their bodies, affecting every organ it can possibly affect, ignoring all medications, surgeries and therapies.

How you handle your disease will, to a great extent, depend on how your disease behaves. But for all of us, no matter how our disease is behaving, the watchwords are - range of motion daily!!

Reducing inflammation with anti-inflammatories can help, too. Interestingly, it would appear that our bodies "get used" to an anti-inflammatory after a certain period of time. It is not unusual for a drug to work for a few months to a few years, then seem to quit working. This means switching drugs and getting used to an entirely new set of side-effects every so often. This is simply a part of the disease.

For this reason, if no other, it is important to establish a good relationship with an excellent rheumatologist as early-on in the process as possible.

I hope this has been a little helpful. I'm interested in how you are experiencing RA - is it rapidly progressing? responsive to drug therapy? responsive to physical or occupational therapy?

Cheerio!
Elizabeth

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~*~ But pain... seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain? ~*~
~*~ Lois McMaster Bujold, Barrayar 1991 ~*~ *~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~ *~*