Author Topic: If my bloodwork is normal, why do I ache?  (Read 2558 times)

SjoGirl

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If my bloodwork is normal, why do I ache?
« on: May 24, 2017, 04:13:24 PM »
At my last rheumy visit he ordered ultrasounds of my hands, which ended up showing inflammation in the joints in my fingers and wrists.
He then called and said he wants to consider prescribing Imuran because there is inflammation in the joints, but he wanted to do some blood work first to be sure I can metabolize it.

Well, I am not sure about the enzyme reading, but everything else except sodium (very slightly low) is normal and normal can be (SED rate right in middle of the scale). So my questions:

1. Why do I ache?
2. Why do I become fatigued so easily?
3. Will I benefit from Imuran?

Any thoughts would be welcome.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

irish

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Re: If my bloodwork is normal, why do I ache?
« Reply #1 on: May 24, 2017, 07:41:18 PM »
Have you ever been on Methotrexate for your Sjogrens?? Many doctors will use this drug first for these type of inflammatory problems. I guess I would ask about this. Imuran is a good drug but it has been my understanding that the order that most drugs are given is Plaquenil, then methotrexate, then Imuran and then cellcept. Sometimes the order is changed but if you read the posts on this site this seems to be the order. Of course, many times the prednisone is used for short times or longer times as needed.

All of the drugs are good and they all work but not for everyone. We just have to try a med and see how we react to it and how it works out for us. You ache because you have autoimmune disease and fatigue is also a constant companion of autoimmune disease. I don't think there has been a person on this site that didn't complain of fatigue.

Our body is on high alert producing antibodies that are trying to kill off our different cells and systems and this requires a lot of energy which depletes us of our usable strength. My strength is up and down but never good anymore. Thankfully energy does go up and down cause we can get a little down here and there. Also, fatigue doesn't kill us but it can make our life interesting.

There is not an answer for many questions we have as autoimmune patients all have different symptoms and reactions to drugs.,etc. We all learn as the years go by to have patience with ourselves and our illness. This patience is what helps us build the strength and endurance it takes to deal with illness. When we get too upset we stress our bodies so much that we are our own worst enemies. I hope things go well. Keep us updated on how things are going with your treatment. Irish

Your blood work is normal because you have seronegative Sjogrens. In other words, you have the illness but not the elevated blood work. Some people have the illness and the elevated blood work. Some people have elevated blood work and no symptoms at all. This is just the way life is. Some doctors have a hard time dealing with patients with symptoms but negative bloodwork, but it is a reality and affects many people this way.
« Last Edit: May 24, 2017, 07:44:14 PM by irish »

Joe S.

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Re: If my bloodwork is normal, why do I ache?
« Reply #2 on: May 24, 2017, 07:44:18 PM »
Pain, 1/2 college credit hour on pain is what you get in medical school. Most of your time is spent on what drugs to avoid and how addictive they are.

So please believe that your pain is real and not in your head. Pain is your bodies way of telling you that something is wrong in your body. It may not show on X-rays or appear in blood work but YOUR PAIN IS REAL!


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Dawnmist

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Re: If my bloodwork is normal, why do I ache?
« Reply #3 on: May 25, 2017, 12:41:19 AM »
Pain, 1/2 college credit hour on pain is what you get in medical school. Most of your time is spent on what drugs to avoid and how addictive they are.

So please believe that your pain is real and not in your head. Pain is your bodies way of telling you that something is wrong in your body. It may not show on X-rays or appear in blood work but YOUR PAIN IS REAL!

Absolutely!

I did an online "chronic pain management course" run by Macquarie University in Australia last year, and what Joe said was something they emphasized. As it turned out, there wasn't any techniques for managing with pain that they taught that I hadn't already been using for several years, but the accompanying discussions into research/etc were fascinating reading, and I did find it useful as a 'refresher'. There is one section that I took a screenshot of to keep, where they explicitly said that there is no such thing as 'mental' or 'psychological' pain - that Pain is pain, and it is all real. Image link (190Kb): http://www.dawnmist.net/PainIsPain.png
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Linda196

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Re: If my bloodwork is normal, why do I ache?
« Reply #4 on: May 25, 2017, 04:45:14 AM »
In another lifetime, in nursing school, we were taught that we can not treat pain, we can only treat the perception of pain, and therefore we don't treat what we expect our patients to experience from whatever cause, we treat what they tell us they feel. Granted, there is some latitude, for example a patient complaining of 10/10 pain from a paper cut may get a different approach than a patient complaining of 6/10 pain from a traumatic amputation (and I've seen both), but either way their pain is to be addressed as it pertains to them.

I've run into the same philosophy in the pain management clinic I attended in my 20's for inflammatory arthritis secondary to sarcoidosis, and that particular clinic focused on patient-centric treatment, like biofeedback; meditation, physical relief in the form of massage, heat and cold and acupuncture/pressure; as well as the appropriate and judicious use of medications.

I've personally never been told my pain was "all in my head" (except by my migraine doctor) nor have I ever told any of my patients that, although I have been shown, and shown others, how emotions can influence our physical responses, and that depression or anxiety can make existing pain worse (not feel worse, but actually be worse).

Many of the doctors I've worked with subscribe to the same theories, and I've audited classes at Dalhousie University  in Nova Scotia, where their third year pain management classes for medical students is half a semester long, with clinical experience for month, so at least in my experience, the 1/2 college credit hour hasn't applied.

As valuable as a discussion on the science and treatment of pain, and everyone's personal experiences is, we haven't really addressed SjoGirls question directly.

It is very possible to have advanced inflammation with normal lab values. The tests for inflammation are not a direct measurement of inflammation, rather a measurement of the body's reaction to it.....Sed Rate measures the "thickening" of serum as a result of increases circulating white blood cells, which slows the rate of the settling of red cells in the serum (sedimentation). In some cases, for a number of reasons ranging from dilute (more liquid) whole blood that takes many more white cells to "thicken" to decreased white cells to cause the thickening, the inflammation doesn't cause the thickening, and the red cells settle at a normal rate even in the presence of inflammation. The CRP measures a protein produced by the body in response to inflammation, and there are some people in whom production is slow, delayed or absent, for reasons varying from alterations in the complement production system to protein deficiencies .

The aching may be the result of existing damage, lactic acid imbalance in the muscles, or something as basic and as complex as fatigue.

The best description of the cause of fatigue in autoimmunity I've ever heard was from a child with JRA. She said, "I get tired because the soldiers in my body are fighting the bad guys every minute, and they never take a break because they think my bones are some of the bad guys, so I'm always tired for them". For the same reason that a  virus makes us so "dragged out" we are easily fatigued because our energy is zapped, continually, but the ongoing battle our immune system is fighting, albeit mistakenly focused.

As to whether Imuran will help you, none of us can say. It comes down to your personal experience, once your doctor makes a decision about the metabolism issue. Effectiveness can't be predicted, only learned from experience.
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SjoGirl

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Re: If my bloodwork is normal, why do I ache?
« Reply #5 on: May 25, 2017, 01:21:09 PM »
Hello all,

Thanks so much!

Linda and others, fortunately no one has said that the pain is all in my head, I'm just doubting myself. Joe thanks for the reinforcement and Dawnmist, I am trying to practice other pain control methods and they do help.

Irish, I can' tolerate Plaquenil or Mexotrethate, which is why he's considering Imuran (of course it has some similar effects to the other two drugs so I might not be able to tolerate it either).

Linda thanks for the in-depth info it's invaluable. I love the description of soldiers fighting bones. When I first became ill I swear I could feel fighting underneath my skin, it was horrible, but difficult to describe to a doc.

Thanks again all, I will keep you posted.

SjoGirl





 
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Carolina

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Re: If my bloodwork is normal, why do I ache?
« Reply #6 on: May 26, 2017, 10:15:02 AM »
You ache because you probably still have some underlying inflammation, and because even changes in weather will cause damaged places to hurt.

Try meditation and closing the 'pain gates' to get to sleep.  That's what I do.

https://en.wikipedia.org/wiki/Gate_control_theory

Part of this theory proposes that other input (a friendly phone call) can block the input from pain sources.

All pain is actually IN OUR HEADS.  That is where we receive the nerve impulses of pain.  Competing input can sometimes override the pain input.

And if you mediate (which is competing input in intself) AND imagine your spine. You may be able to 'close' a pain gate.  When you do that, pain from below the gate is blocked.

My biggest problem is that the worst source of my pain is IN C1 and C2 of my cervical (neck) spine.
So it is hard to close the gates where the pain is originating.

I know pain gates sound weird, but I first heard of them in a pain management course developed by DUKE and UNC medical centers.

The damage is ALREADY done, and those damaged place will always be a problem

Normal bloodwork should mean that NO NEW DAMAGE will be done by your immune system as it is no longer attacking your systems/organs.

Hugs, Elaine
« Last Edit: May 26, 2017, 08:49:46 PM by Carolina »
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SjoGirl

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Re: If my bloodwork is normal, why do I ache?
« Reply #7 on: May 26, 2017, 02:26:12 PM »
Carolina,

Thanks for the pain gate information. I have read about pain, but had not heard about pain gates.

I've found that distraction and meditation, or resting, can help with muscle or joint aches or headaches, not so much for pain from neuropathy (which I have quite a bit of in part from spine issues, but also peripheral neuropathy).

I try to keep myself occupied and focus on others. As well, when I rest I rest and allow my body to relax. I have also started exercising again and while I ache the day after it's keeping me strong and enabling me to use better posture which = less pain.

Thanks again, all very helpful.

SjoGirl
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

trejonina

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Re: If my bloodwork is normal, why do I ache?
« Reply #8 on: May 30, 2017, 01:55:29 PM »
Hi, have you been tested for RA?? It could also be that besides  SJ , you also have RA or Seronegative RA even in a mild form??

SjoGirl

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Re: If my bloodwork is normal, why do I ache?
« Reply #9 on: May 30, 2017, 02:11:38 PM »
Hello all,

Here's what my rhuemy has to say about my hands:

Inflammation seen in the MCP joints is more secondary to the sjogren's syndrome rather than typical erosive osteoarthritis.  The MCP joints are more commonly affected by the inflammatory arthritis of sjogren's rather than osteoarthritis and this is the reason I would go with the sjogren's as the reason.

Ah Sjogren's it's a gift that keeps on giving.

We're still waiting for enzyme test results to learn whether I can try Imuran. In the mean time he is going to order hand OT as soon as I find a provider (I am pretty sure my favorite PT place will provide that service). Think I'm looking forward to a Parafin bath.

SjoGirl
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.