Lupus Community
Anyone have normal ESR or muscle pain instead of joint pain
About This Community:

This patient support community is for discussions relating to lupus.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Anyone have normal ESR or muscle pain instead of joint pain

Have any of you with an autoimmune diagnosis, Lupus, or like such, always had normal inflammatory markers, or do they normally get high when your in a flare? Do any of you suffer muscle pain from it instead of joint pain?
Related Discussions
17 Comments Post a Comment
Blank
Avatar_m_tn
I do have SLE and do expereince muscular pains in my lower legs. I use Calms Forte (w/ Quinine) at night along with extra Potassium. I take so many pills as it is to keep the SLE in check, I hate to take more drugs.
Blank
434278_tn?1324709825
I have never had elevated inflammatory markers.  It seems strange to me that my joints can be red and swollen and my whole body feels like one big inflammatory mess and still have a normal sed and white blood count.  

95% of lupus patients have joint pain with or w/o swelling.  90% have muscle pain.  If all you have is muscle pain, you might have fibromyalgia or polymyalgia.  

What are your symptoms and has any of the lab been off?  Have they tested your ANA?
Blank
1549643_tn?1293987479
I've had severe fatigue for 14 yrs. I have leg cramps, severe back pain, hip pain, my fingers and hands hurt, and my fingers feel like they are losing their strength. I also have muscle weekness in my arms and legs. I have neuropathic pain really bad right now too. I've had low white blood cell counts, low b12 & vit d, that's it. I've also shown plenty of past urine tests with lots of blood, sometimes traces of protein but I don't have kidney disease. I've had stones & 2 kidney infections. I am being evaluated for heart disease next wk. I have severe gerd and upper GI issues, bladder inflamation (inflammation). No rashes, no swelling. My ANA is 1:640 and my RNP was 7.3 when first re-tested last year. I have lip ulcerations that break out at the beginning of my flares. I responded to antimalarials. I've had plaquenil cause a false negative ANA. I had doxycycline drop my RNP levels by half, and when I discontinued treatment, my RNP started going back up. My rhematologist acted like the only symptoms I had was fatigue and muscle pain and said that was too vague for anything. She said I didn't fit the criteria for anything. I have been diagnosed with fibromyalgia for 11 years, and had a past diagnosis of Lupus and CFS. She implyed that my problems were nothing and said the only reason I wasn't active, was because I didn't make myself, it's mind over matter. She also said most people have fibro because they are depressed, and implyed what a full of crap diagnosis CFS is and that it has nothing to do with your immune system. I guess that is why it gets it's name CFIDS. Chronic fatigue immune dysfunction syndrome huh, I guess she knows more than anyone else.
Blank
434278_tn?1324709825
To start with, you have had some markers in your labwork.  I'm sorry your dr. is giving you the run-around.  An ANA of 1:640 is a significant number.  

The anti-RNP is essential for a dx of MCTD (a lupus look-alike), but is not specific to this disease since 20-30% of lupus patients and a small number w/ scleroderma or RA also have the antibody.  

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx. I've * the ones you said you have.

They are:
1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
*4. oral and nose ulcers
*5. arthritis (95%)
6. serositis - inflamation (inflammation) of the lining of the lung or heart
*7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
*9. anemia or low white blood count or lymphopenia or low platelet count
*10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

That's 5 out of the 11 criteria for lupus.  I'm not sure about #7 though.  

I would change doctors.  

I've also heard that about plaquinel causing the ANA to read negative.  The last time they checked my ANA it was neg.  But the Lupus Foundation told me that the ANA can vary greatly and is not an indicator of disease activity.  I know that sun exposure can cause the ANA to be elevated.

It is possible that you have fibro and maybe even CFIDs.  But I just know that all of my symptoms got better when I started on Plaquinel.  The best thing you can do for yourself is try to get a good nights sleep and try to stay positive.  I know that is hard (been there).  Because depression is a symptom of lupus.  I just want to speak hope into your life.  

God bless, Kara
Blank
1549643_tn?1293987479
I've also had issues with psychosis, it's not that I believe it, but I have heard & seen paranormal things. I saw a butterfly rash on my face after using tanning beds. That was only once, but I've only done the tanning thing once. I stay out of the sun, it makes me sick. The heat causes me nausea, headaches, the dryness in my nose gets worse, and my fatigue worsens. Summer is definetly not my favorite time of year. I'm not sure what serositis is, but I've had pleurisy. I just think it's more than fibromyalgia. Right now, I'm on a low dose of Imuran and plaquenil, been so for 1 1/2 wks and already starting to feel better. My fatigue is lessening, my nerve pain & sensations have really calmed down from the Imuran, the muscle pain isn't bad. Neurontin did nothing for me like Imuran is. Plaquenil never helped it either. Why is it my nerve pain is so responsive to Imuran?

If it is true your ANA is not an indicator of disease activity, then why did I feel better when my RNP lowered, and worse when it started raising again? In a month and half on doxycycline and mobic, it went from 7.3 to 3.4 and I felt better. Then it started raising after treatment was stopped and I started getting sick again. I think it's indicative of how treatment is working, regardless of what's told.

And when you go on treatment and it makes you go ANA negative, I am very curious about this. In the case if your ANA results are false positive, if you take antimalarials or immunosuppressive medication and it does that, does that mean your not false positive, or would anyone react that way, healthy or not? That's one question I really need the answer to.
Blank
434278_tn?1324709825
I have tried three times to answer your post.  Something has always happened to mess it up.  

It is true, the ANA is not an indicator of disease activity.  RNP is associated w/ mixed connective tissue disease, but can also go along w/ other things.  What pattern is your ANA?

I'm not sure if RNP is an indicator of disease activity.  I searched for that answer, but couldn't find it.  To answer your question if antimalarials cause a false negative, or whether those levels just fluctuate on their own.  I do  know that sun exposure will cause your ANA to be elevated if you have lupus.  

Serositis is inflamation (inflammation) in the linning of the lungs or heart.  I'm not sure what test or manifestation would indicate this.  I would imagive the symptoms would be over the top.  

Hope this helps.
God bless, Kara
Blank
1549643_tn?1293987479
My ANA has been high for 11 yrs of being tested. I do not get out in the sun unless it is to drive somewhere. Very sensitive to heat. Sorry I kept reposting, I was distraught/upset over my rheumatology appt. I know that I need a new doctor. Will ask for a referral in a couple of days when I see my neuro. He is evaluating me for MS but he believes it's an autoimmune disease. I think he's right. My symptoms are too extreme to be nothing. I think doctors are too easy at blaming fatigue & pain on depression. There are days I can't get off the couch or out of bed, alot of my days, I am so tired, I just can't do anything. No stress/depression involved. The better days, I get things done, I fight it when I can, and I am very content on those days I can get something accomplished.
Blank
434278_tn?1324709825
I think you're right.  It makes me mad when they want to throw the depression and a pill that makes your mouth feel like your mouth is producing cotton.  Of corse we're depressed.  If you were as sick as we are, you would be too.  BUT THAT IS NOT THE SORCE OF THE PROBLEM!!!  Yes, that is a sensitive subject for me. :(

I know it's hard, but stay positive, girl.  11 years is a very long time.  I'm glad you have a neurologist who is working w/ you.  I know the few drs. that I feel is on my side, I really appreciate.  

What pattern is your ANA?  And what levels have they been?

I'm not sure what the treatment would be for MCTD.  I know Plaquinel has done wonders for me.  And it is also used w/ RA.  

Do you have a regular GP?  

Praying for you.  
Blank
1549643_tn?1293987479
Last year my RNP was 7.3. After treatment with doxycycline, it went down to 3.4 in 1 1/2 mths. After treatment was stopped, I started getting sick again, it started raising, and eventually stabalized. I started treatment with plaquenil & imuran about 1 1/2 mths ago, and had it rechecked and my RNP went from 4.3 to 3.0. I just got my lab work back on that. There's nothing really showing in my lab work, I've just had low WBC's & vit deficiencies. My neuro says you don't need elevated inflammatory markers to have Lupus but alot of other doctors around here beg to differ. They rely on that blood test and blow off your symptoms if it isn't positive.

Yes I found out the ANA does not necessarily correlate with disease activity but the antibodies can, anti-dsdna is especially known to fluncuate during flares and to lower with treatment of steriods and immunotherapy. RNP can fluncuate also but they aren't sure if it correlates with disease activity or not. From my test results, it's saying it does. And I do not at all think a false positive ANA would do such a thing.

I have 7 of the criteria on Lupus, #3, #4, #5, #6, #8, #9, #10, and I am adding #6 because it can be due to pleurisy also from where I have seen the lupus criteria online. I'm not sure what I'd meet the criteria for with MCTD cause I don't have swollen fingers/hands or Raynaud's, I just have muscle weekness. I know the autoimmune diseases cause the neuropathy because my neuro told me it does.

Yes I have a regular GP, exceptionally nice, he put me on meds. The rheumy I went to wouldn't do a thing. My patterns through his lab was homogenous & nucleosis. I've had homogenous pattern for along time. I don't know what the pattern was, when I had my blood work through the rheumy and my RNP was high. The other ANA's I've had done lately doesn't show a pattern. It's 1:640 right now, in the past it was always 1:320.
Blank
434278_tn?1324709825
OK, from what I've read in "The Lupus Book" by Dr. Wallace, he said Nucleolar pattern suggest scleroderma and Homogeneous suggest SLE.

RNP is essential for the dx of MCTD.  However, it is not specific to this disease since 20-30% of lupus patients and a small number of scleroderma or RA also have the antibody.  

I'm glad you have a GP that is working w/ you.  I can relate w/ your frustrations w/ rheumatologist.  I'm not sure what it takes to get a dx.  Yes, autoimmune can cause neuropathy.  It is when the body attacks the nervous system.  

How are you doing on the plaquinel and imuran?  Did your dr. start these at the same time?  Are you also on vit D?  Most people w/ autiummune diseases have low vit D levels.  This can make a big impact on the muscle and bone pain.  
Blank
1549643_tn?1293987479
I'm not 100% but definetly feeling better. The medication helps until I get an infection, and then I'm down for about a month from that. Yes I started both at the same time. I need to start medication to keep me from getting sick, like doxycycline or something. I am on vit d & b12 from my doctor. The deficiency showed up last year. My neuro put me on amantadine, that helps. I'm using ibuprofen & toradol to control pain when it gets bad. He raised my mgs on my neurontin, that is definetly helping the nerve issues. That & ditropan helps my bladder issues. My muscle weekness is gone, plaquenil is really great for that problem. I want my fatigue under more control but I am managing to stay out of bed and get things done around the house. I would just like to get to the point that I could work. I am also being referred to a new rheumatologist but it'll probably be about 4 mths before I can see him. I don't care about going to another one but my neuro really wants me to.
Blank
434278_tn?1324709825
I have another question, is Imuran and Amantadine the same thing?

I don't know how long you have been on Plaquinel and other meds, but I basically take Plaquinel and occasionally tylenol and ibuprophen for pain.  It seemed like it took about a year on Plaquinel to see the full affect, maybe even two.  I remember feeling like....I'm better, but I certainly am not anywhere near where I came from.  But I now feel pretty close.  I am so thankful for the energy and the gift of life!
Blank
1549643_tn?1293987479
Thank you for putting a smile on my face. That story gives someone like me, who hasn't reached that point yet, hope that's it's going to keep getting better. I'm glad your doing so well.

No it's not the same thing. Imuran is the immunosupressive, and amantadine is used to treat chronic fatigue. It kind of takes the edge off of the fatigue which is great. I'm not taking Imuran now, but I'm on doxycycline. My WBC's were getting on the lower end and I didn't want to take the risk of them becoming abnormal.

The rheumatologist denied seeing me and I have no idea why. He was the last one around here that takes my insurance, or so my doctor thought he did. I'm starting to think the last rheumatologist I saw was so rude to me because she didn't want to deal with my insurance (medicaid)..

I have a sun rash on both of my arms right now, does anything help clear that up?


Blank
434278_tn?1324709825
So sorry to hear about te rhemy not wanting to take you.  The stress from that is not good for you.  I just go to my regular dr. for medical care.  Rhematologist didn't seem to want to help unless I had organs shutting down.  

I'm not sure what to tell you about the sun rash on your arm.  I'm assuming you are staying out of the sun and using sun block.  I know even w/ those measures I still get a rash on my arms.  But honestly, I don't pay much attention to it.  You might could try hydrocortisone cream to see if it clears it up.  If it is really bad, you might want to see a dermatologist.  It might be discoid lupus.
Blank
Avatar_f_tn
Hi,
I suffer from Autoimmune Chronic Hepatitis (non-infectious), which basically means, my body rejects my own liver.

I was doing pretty good, UNTIL (there always has to be one bloody UNTIL) I started getting these AWFUL, verging on incapacitating, joint and muscular pains. I just saw my Hepatologue -who by the way is EXCELLENT- and he informed me it is in fact the Ummuran doing it.

So basically I am waiting for this set of blood tests, results due in two weeks (TWO WEEKS!!), until I may possibly have a reduction on my dose of Immuran;  in the meantime I am stuck with this -sometimes- excruciating pain.

Could anyone PLEASE tell me how to manage this pain while I wait?? I've taken Panadeine Forte and it did nothing; I have also taken rather strong doses of Tramadol and it sort of helps -but not quite, although I become "functional" with it.

If anyone knows, could they please, please tell me if there are better ways to deal with the pain while I wait?
Thanks in advance.
Blank
Avatar_f_tn
Hi,
I suffer from Autoimmune Chronic Hepatitis (non-infectious), which basically means, my body rejects my own liver.

I was doing pretty good, UNTIL (there always has to be one bloody UNTIL) I started getting these AWFUL, verging on incapacitating, joint and muscular pains. I just saw my Hepatologue -who by the way is EXCELLENT- and he informed me it is in fact the Ummuran doing it.

So basically I am waiting for this set of blood tests, results due in two weeks (TWO WEEKS!!), until I may possibly have a reduction on my dose of Immuran;  in the meantime I am stuck with this -sometimes- excruciating pain.

Could anyone PLEASE tell me how to manage this pain while I wait?? I've taken Panadeine Forte and it did nothing; I have also taken rather strong doses of Tramadol and it sort of helps -but not quite, although I become "functional" with it.

If anyone knows, could they please, please tell me if there are better ways to deal with the pain while I wait?
Thanks in advance.
Blank
434278_tn?1324709825
Hi and welcome to the forum.
I would not be able to help you on your question, but would encourage you to start a new thread.  Sometimes post get more attention if they are new.  I would also post in the autoimmune forum as well as the one for hepetitis (hepatitis) autoimmune.  
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Lupus Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Autoimmune Answerers
434278_tn?1324709825
Blank
karajo
Spearsville, LA
1530171_tn?1362547225
Blank
TheLightSeeker
London, ON
8221281_tn?1397574572
Blank
Pantx
Denton, TX