Degenerative arthritis/Dr. Steve/Anyone?

[Lea]

ARGHHH!

I have been worked up for a possible autoimmune disease due to having fever, night sweats, and skin lesions. Thankfully I don't have lupus or anything autoimmune per the rheumatologist, but one thing he did say floored me!

He told me I had wide spread degenerative arthritis and I had bone spurs in my ankle big enough to "put a coat hanger on." Apparently I not only have the spondylosis, but have bone spurs in both hands, feet, and knees. At first he gave me the third degree about why I was on pain management, but was a little nicer after the x-rays.

The funny thing about all of this was my lab work. My Sed Rate was completely normal? Does that make sense to anyone? My lab was all "stone cold normal." The rheumotologist told me to come back if I developed any more rashes or mouth sores. The dermatologist put me on minocycline for an apparent staph infection on my skin, but even my CBC was normal?

I would think that with wide spread inflammatory changes in my bones and a staph infection that my lab would show something. If it weren't for my x-rays and the results of the skin biopsy, I think the rheumy would've thrown me out of his office.

Any guesses on why my labwork was so fine and dandy, and my body is falling apart?

[Kathi49]

Lea,

I was told the same thing by my Rheumatologist. After running all the tests in the beginning (about 3 years ago) everything was fine. But I do have widespread arthritis and inflammation. He said I would do best overall with an anti-inflammatory. Sed Rate? Mine was slightly elevated several months ago which caused my GP to send me back to him. But he did tell me something to the effect that they weren't really good as indicators or markers. I am trying to remember specifically what he said. But basically a person can be quite normal (no problems) even with a slightly elevated sed rate. Or be normal and have all kinds of issues. I wish I could get more technical here; I just can't remember specifics. But the bottom line was, he felt the arthritis and the spinal issues were causing inflammation. He did test me again, and once again, no evidence of connective tissue disease, no autoimmune conditions, etc.

Oh, and it seems it is always the xrays that show or showed the arthritis in my spine, hips, knees and ankles. And that is pretty much everywhere I hurt! Well, my shoulders and arms are hurting now, but that is another matter...I think. And now evem my OS is saying widespread inflammation. :(

Maybe Dr. Steve could it explain it better than I can. But I was floored too because you would think something would show up in the lab work and it didn't. Just the slightly elevated sed rate. It had me scared though! I thought all kinds of things were going on...but, nope! Just the arthritis.

[cindybear]

I have those horrible bone spurs up and down my spine , in my hips, hands, Who knows where else...but my sed rate was pretty high.But just diagnosed with osteoartritis,,,It can be a pain in the back at times..or hips...at times it puts me in bed for days....so very painful...I've had mine for about 8 years..diagnosed when I was 35....started with my hands...then hips , then my spine....hugs, Cindy

[GardeniaGirl]

I have a severe autoimmune inflammatory condition that has been going strong for 10 years now.

It took me three years to get on the right meds because my blood work was all completely normal. The first two rheumies greatly minimized my problems because of this. The third, and the one I have stayed with since 1998, is the one who believed my report of my symptoms over my blood numbers. I had one item on it that was slightly elevated in 1997, but that was it.

And now - I am on 5 heavy-duty drugs trying to control this inflammation.

[Lea]

Kathi,

It's quite a frustrating situation. I WAS diagnosed with a connective tissue disease 12 years ago, then I was UN-diagnosed a year after that :confused: For awhile I was labeled as being histrionic. I was also strangely diagnosed at the age of 9 as having juvenile rheumatoid arthritis, and then told later, I never had it:rolleyes: So now at 46, I'm still an enigma. Thank God that my pain issues are so very obvious on MRI's and x-rays now. I am still running a fever and having night sweats and going to see my GP tomorrow and ask her to at least check my thyroid and look into possible hormonal imbalance?

I'm just very glad that I have an awesome PM who has kept me functioning for the past 3 years.

Cindy,

I've had joint pains for years and this is the first time (except for my spine) that there was actual visible damage on plain x-rays. I guess I'd be in a real mess if I weren't so well covered for pain.

Gardeniagirl,

I am so sorry you are having to deal with the autoimmune problems. The rheumotologist told me "I can't diagnose you with lupus" then looked surprised when I said "well isn't that a good thing that you can say I don't have it?" He told me that the skin infection is sometimes a forerunner of lupus, but who honestly wants that kind of diagnosis?

It would be nice, however, to have some diagnosis on which to hang my hat, instead of having all these weird symptoms and then "stone cold normal" labs.

[GardeniaGirl]

Lea, my official diagnosis for a decade now has been "undifferentiated connective tissue disorder."

It has never evolved into lupus or rheumatoid arthritis....but the medications I take are often used for both of these.

There is a lot of grey areas in rheumatology......

hopefully you will find some answers and solutions...

GardeniaGirl

[GJZH]

Gardeniagirl,

I have those annoying bone spurs everywhere as well,....but I did test positive for Rheumatoid Arthritis....I do not show physical signs though of RA...so some docs are saying I do have it and others do not...I started on Plaquenil, but it effected the eyes, so I stopped...I am taking anti-inflammatories for arthritis...Just be thankful you have nothing....the meds are real killers...

[GardeniaGirl]

..Just be thankful you have nothing....the meds are real killers...

Hi GJZH --

Just to clarify - I don't consider my disease to be "nothing."
My signature lists all the meds I am on...3 of which suppress my immune system, 1 is an anti-inflammatory, the other are for pain and sleep and anxiety.

My body is functioning due to chemicals, basically.

I have inflammatory arthritis in every joint in my body including my entire spine.

I've been paying $400 a month in co-pays for Enbrel for almost 7 years now because my insurance company will only cover it fully for people with RA, not my disease. It costs $1,500.00 per month w/o insurance. People with RA (on my insurance) pay a $15 per month co-pay.

So, I can't really say I am any better off for not having RA or lupus, honestly.

[Kathi49]

Gardenia Girl,

I tend to agree that there are grey areas in Rheumatology. I have had heard that before from other people.

What I want to know is...what is it about osteoarthritis that sets us up for inflammation? Is it the chemical messengers? I have never really delved into it; just kind of accepted it for what it is.

I have had such ill luck with anti-inflammatories in the past. But he prescribed Voltaren/Diclofenac which is supposed to be pretty potent and harder on the stomach. Actually, it doesn't bother me too much. It was Celebrex, Viox, Arthrotec and Mobic that really bothered me and I don't know why. I get tinnitus, dizziness and nausea with those but don't with the straight Voltaren. And I still want to know why those particular meds cause all those problems. What is in them that does that particularly the tinnitus?

Anyway, the last couple of days I have been taking Voltaren 75mg and it seems to be helping a lot with the leg pains. But within 20 minutes I get extremely sleepy for about an hour or two and then it passes. I don't think it is because it makes me feel better and I am able to rest. I really do get drowsy.

And, I wanted to mention that my Rheumatologist as well as my Neurologist and GP have run so many labs and tests that I almost feel like a fool when I ask them to keep doing them. :eek: But nothing ever show ups! The only thing that ever did or does was the slightly elevated Sed Rate and the small fiber PN. And I don't have the trigger points for FMS either.

I kind of feel like Lea does, thank goodness (in a way) the arthritis shows up on xrays and MRI's. At least I know I am not dreaming this pain. And I think too with the neuropathic pain and/or damaged nerves it also causes muscle pain since the nerves tell the muscles how to work. That is the main problem with the pelvic floor dysfunction according to the Urogynecologist and ob/gyn. Long story but basically the nerve issues in the lumbar/sacral area are not working correctly or are damaged so the muscles in the pelvic floor are weak and another reason the doc told me to get the lumbar issues taken care of first if I could.

Anyway, my PM told me this a year ago, he said, "Arthritis is very, very painful but when you throw neuropathic pain at it, which is what you have, it is very debilitating." Well, for me, that's the truth! And last but not least after I had the first cervical fusion, after it was totally fused, the NS said, "Take those anti-inflammatories!" But finding the right one took awhile. I just have to be careful and try to protect my stomach.

[Lea]

And, I wanted to mention that my Rheumatologist as well as my Neurologist and GP have run so many labs and tests that I almost feel like a fool when I ask them to keep doing them. :eek: But nothing ever show ups! The only thing that ever did or does was the slightly elevated Sed Rate and the small fiber PN. And I don't have the trigger points for FMS either.

I kind of feel like Lea does, thank goodness (in a way) the arthritis shows up on xrays and MRI's. At least I know I am not dreaming this pain. And I think too with the neuropathic pain and/or damaged nerves it also causes muscle pain since the nerves tell the muscles how to work. That is the main problem with the pelvic floor dysfunction according to the Urogynecologist and ob/gyn. Long story but basically the nerve issues in the lumbar/sacral area are not working correctly or are damaged so the muscles in the pelvic floor are weak and another reason the doc told me to get the lumbar issues taken care of first if I could.

Anyway, my PM told me this a year ago, he said, "Arthritis is very, very painful but when you throw neuropathic pain at it, which is what you have, it is very debilitating." Well, for me, that's the truth! And last but not least after I had the first cervical fusion, after it was totally fused, the NS said, "Take those anti-inflammatories!" But finding the right one took awhile. I just have to be careful and try to protect my stomach.

Kathi,

I saw my PCP again today. She is also puzzled about my labs and told me that my arthritis was particuarly bad. My BP was 180/100 this morning and has been creeping up for a year so I've been started on Catapres patches. Also found out that I am a "staph carrier" from the cultures they did, but they didn't find out whether it was MRSA or not. I thought the nightsweats I had been having may be due to menopause sxs, but she disagrees with that as well, so is testing me for my autoimmune disorders and is checking out my thyroid.

She asked me if I was having pain. DUH! I told her I always have pain, but that I try to ignore it or otherwise I wouldn't have much of a life. I am apparently in some type of flare of something:confused: My wrist is swollen and my left ankle is getting red and swollen, but my labs are normal:rolleyes: She went over the results with me this morning. Now she is also looking at theochromocytosis, which although I can spell it, I haven't had the nerve to look it up:p

I am taking OTC Naprosyn for now. I've been on multiple NSAIDS too, but with my asthma, I have to be careful.

I agree that rheumatology is a very gray area indeed, especially in my case. I am very fortunate that this PCP is so thorough and so very fresh out of school. She isn't afraid to spend time with her patients and has a very limited caseload right now, so she really does pay attention.

[Kathi49]

Lea,

I am glad your PCP is taking the time with you. :) I was going to say that osteoarthritis doesn't normally cause redness or swelling; not that I know of. Someone can correct me if I am wrong. For me osteo just makes my joints and spine hurt; but no swelling or redness. However, RA would.

I know the what you are speaking of even though I can't spell that word either LOL! I have a friend and they were looking at that for him too. But he didn't have it. It was some kind of glandular thing; geez I can't remember EXACTLY now. I just remember him telling me about it and wanted me to look it up for him and that was about 3 years ago! Dang, I forget how to spell it now too LOL!

Okay, I am a little confused now too. If the labs were normal and just now she is running the autoimmune tests, then how does she know that your arthritis is "really bad"? And I just mean osteoarthritis. Maybe I am missing something unless you mean from the xrays.

It's good they are looking at other autoimmune conditions and your thyroid too. I had ALL that done and still nothing. Anyway, it sounds more like Rheumatoid Arthritis at this point in time only based on your description but I am no doctor either LOL. But have them do all the testing of course and see where it goes from there. :)

[Lea]

Kathi,

As far as I know osteoarthritis doesn't cause redness or swelling either, so go figure:confused: My PCP said the x-rays indicated that my arthritis is quite severe.

My 11 year old has been going to some appts with me. Last night he wailed "Oh NO!!!! I live with OLD people!:eek: Although I am 46, most people mistake me for being in my mid thirties, it's my body that insists that I'm old.

I truly hope they can figure this out. After finally being able to return to work, it really scares me when I start having problems getting through the work day again.

I hope your shoulder responds to the injections. I know that the injections really help me, but they certainly hurt like H-E double hockey sticks:o

[GJZH]

Kathi and Lea,

I thought I would go to the National Institute of Health for a definition of RA and OA...They are both different, but yet have some similarities...

Kathi I think they can tell the severity of osteo by looking at the x-rays...My RA doc looks at the x-rays and circles everything...I have tested positive for RA and have osteo as well...

I too have found that the Voltaren is easy on the Tinnitus and in fact it has all but gone away...You are right about the the Voltaren too. It is easy on the stomach...much more so than Celebrex or Ectodolac....Mobic made me swell and retain water...

Gardenia I did not mean to imply "nothing"...poor choice of words on my part...my apology,..

My insurance does not pay for my many of meds...Many of the insurance companies are denying payment now...so you are not alone there...diagnosed or not...we do not get reimbursed...



Features of Rheumatoid Arthritis

Tender, warm, swollen joints
Symmetrical pattern of affected joints
Joint inflammation often affecting the wrist and finger joints closest to the hand
Joint inflammation sometimes affecting other joints, including the neck, shoulders, elbows, hips, knees, ankles, and feet
Fatigue, occasional fevers, a general sense of not feeling well
Pain and stiffness lasting for more than 30 minutes in the morning or after a long rest
Symptoms that last for many years
Variability of symptoms among people with the disease


How Rheumatoid Arthritis Develops and Progresses

The Joints

A joint is a place where two bones meet. The ends of the bones are covered by cartilage, which allows for easy movement of the two bones. The joint is surrounded by a capsule that protects and supports it. (See illustration.) The joint capsule is lined with a type of tissue called synovium, which produces synovial fluid, a clear substance that lubricates and nourishes the cartilage and bones inside the joint capsule.

Like many other rheumatic diseases, rheumatoid arthritis is an autoimmune disease (auto means self), so-called because a person's immune system, which normally helps protect the body from infection and disease, attacks joint tissues for unknown reasons. White blood cells, the agents of the immune system, travel to the synovium and cause inflammation (synovitis), characterized by warmth, redness, swelling, and pain--typical symptoms of rheumatoid arthritis. During the inflammation process, the normally thin synovium becomes thick and makes the joint swollen and puffy to the touch.

A joint (the place where two bones meet) is surrounded by a capsule that protects and supports it. The joint capsule is lined with a type of tissue called synovium, which produces synovial fluid that lubricates and nourishes joint tissues. In rheumatoid arthritis, the synovium becomes inflamed, causing warmth, redness, swelling, and pain. As the disease progresses, the inflamed synovium invades and damages the cartilage and bone of the joint. Surrounding muscles, ligaments, and tendons become weakened. Rheumatoid arthritis also can cause more generalized bone loss that may lead to osteoporosis (fragile bones that are prone to fracture).


As rheumatoid arthritis progresses, the inflamed synovium invades and destroys the cartilage and bone within the joint. The surrounding muscles, ligaments, and tendons that support and stabilize the joint become weak and unable to work normally. These effects lead to the pain and joint damage often seen in rheumatoid arthritis. Researchers studying rheumatoid arthritis now believe that it begins to damage bones during the first year or two that a person has the disease, one reason why early diagnosis and treatment are so important.

On the other hand Osteoarthrits is ....

The Warning Signs of Osteoarthritis:

*stiffness in a joint after getting out of bed or sitting for a long time

*swelling in one or more joints

*a crunching feeling or the sound of bone rubbing on bone

About a third of people whose x rays show evidence of osteoarthritis report pain or other symptoms. For those who experience steady or intermittent pain, it is typically aggravated by activity and relieved by rest.

If you feel hot or your skin turns red, you probably do not have osteoarthritis. Check with your doctor about other causes, such as rheumatoid arthritis.

Osteoarthritis (AH-stee-oh-ar-THREYE-tis) is the most common type of arthritis, and is seen especially among older people. Sometimes it is called degenerative joint disease or osteoarthrosis.

Osteoarthritis mostly affects cartilage (KAR-til-uj), the hard but slippery tissue that covers the ends of bones where they meet to form a joint. Healthy cartilage allows bones to glide over one another. It also absorbs energy from the shock of physical movement. In osteoarthritis, the surface layer of cartilage breaks down and wears away. This allows bones under the cartilage to rub together, causing pain, swelling, and loss of motion of the joint. Over time, the joint may lose its normal shape. Also, small deposits of bone – called osteophytes or bone spurs – may grow on the edges of the joint. Bits of bone or cartilage can break off and float inside the joint space. This causes more pain and damage.

People with osteoarthritis usually have joint pain and some movement limitations. Unlike some other forms of arthritis, such as rheumatoid arthritis, osteoarthritis affects only joint function and does not affect skin tissue, the lungs, the eyes, or the blood vessels.

In rheumatoid arthritis, the second most common form of arthritis, the immune system attacks the tissues of the joints, leading to pain, inflammation, and eventually joint damage and malformation. It typically begins at a younger age than osteoarthritis, causes swelling and redness in joints, and may make people feel sick, tired, and uncommonly feverish.

[Mark N]

Lea and others, sorry to hear your doctors ignore your symptoms because the test don't 'prove' you have arthritis. It was humorous and sad to hear someone's doctor was getting on to them about being on PM until the bone spurs showed up on the test. Keep pushing for the right treatment. I may be way off the mark Lea but is there any chance your meds are causing the fever and night sweats. I ask because I have those symptoms at different times and I know mine is from my meds.

[Kathi49]

Agree Gloria!

It's funny I did talk to my pharmacist yesterday about Voltaren vs Celebrex and the issues with my stomach. And he said that even though the Voltaren is a lower dose, I would be better off with the Celebrex. So, I took one last night just waiting for some kind of reaction and nothing happened. Then again, that was just one pill one time. And all that happened was that I got sleepy within 20 minutes of taking it.

So, I will try this for a few days. If the tinnitus comes back or I get dizzy, I am ditching it. I will NOT go through that again.

Maybe just maybe when I took it years ago, before the first fusion, the dizziness was caused by the neck problem along with "Morontin" and not the Celebrex at all.

But let me try it for a few days and just wait and see what happens. It all remains to be seen. :)

Mark,

I agree about the meds and sweating. I don't have that too much anymore because I take a small amount of Norco. But I know when I was taking more after the surgeries, I would sweat and itch a little.

[Lea]

Mark,

Good point about the meds and possible drug fever and sweats. I had thought about that too, it's just that I have over symptoms that are going along with it like increased blood pressure, increased joint pain, and a recent infection.

Still, those "other symptoms" could be incidental and the meds are causing this. Who knows? It's just darn uncomfortable.

[curiousforever]

Ha. My sed rate, platelets are ALWAYS high. My RF flip flops.

And I am diagnosed with 'chronic pain syndrome' or something of the like.

It's frustrating isn't it?

Hugs- hope they can figure something out.