Reposting As Question - RH Level Up, Sed Rate Up, Confusing Symptoms - Worried
Sorry, I added a new thread, and think I should have posted this as a question. If any of the mods. want to delete one and place it in the appropriate place, please do.
This is my first post here, but I need some input aside from my trusted GP of 26 years who is very good, but we are in a "wait and see" mode, so I am anxious of course. Forgive the "history," but I think it is needed for people to give an accurate opinion.
I am a 62 y.o. male who has had fibromyalgia diagnosed since about 1994, and I am sure something was starting up before that for many years. Of course back then it was not well known. :/
I have, and am used to mild to moderate aches and pains (depends on weather, stress levels, etc.) and the other things associated with FMS. I have good days and bad days of course. Recently (past 2-3 months) my right shoulder "AC joint" has been sore to pressure and a little swollen for no apparent reason. I showed my chiropractor and he said it could be due to many things and he sees a lot of it. My GP agreed, and said if there was actual pain without pressing on it we could investigate ways to reduce the imflamation and swelling - otherwise, not a big deal. Ice it and give it some time. I get a "CBC" monthly to check my platelet levels and we also check sed rare and CRP, electrolytes and 2-3 other tests to check for any auto immune things starting up every about 3-4 months. Fibromyalgia CAN lead to other auto-immune diseases, my docs have said, and I have read many places, so my doc just wants to monitor things.
This week I went in for a check up and the more complete lab tests. Today he called me and said for the first time he can recall my RH Factor was elevated at 36 (his labs normal is 25 or less) and ESR/Sed Rate was 30. ANA was negative as was double stranded DNA. CRP was <.5 which is normal with his labs. All else in CBC was normal also. Sed rate at 30 is no big deal. I've had that before when I had the flu or a bad sore throat. I asked what he thought. He said negative ANA and also negative CRP were good signs and unless I had more aching or swelling in my joints other than the one right shoulder, he was not too worried. He said most of his RA patients have sed rates over 50 and usually CRP will be up also. He also said with no other "clinical" symptoms, like pain and stiffness on one or both sides in hands or other joints, it just doesn't sound like RA at this point. Next time I go in (4 weeks) he'll X-Ray my hands and wrists, because they often show changes that can't be seen that would possibly indicate RA had been going on at some level for awhile. I have no morning stiffness of any kind these days, but that's OK, being a divorced old bachelor. I have the aching from the fibromyalgia, which I can control with meditation, OTC pain pills and a few other holistic home treatment things. I am lucky it seems to have calmed down in the past 3-4 years with occasional flares.
My mother had dermatomyositis, which gives me a little more chance of an auto immune system disease - and I have the fibromyalgia and also the idiopathic thrombocytopenia, which both are loosely or more largely considered to be diseases of the immune system, depending on who you ask or what you read.
So now I wait. I would be lying if I said I was not abit upset about the elevated RH value, but I think probably synovitis in the shoulder could cause that to be elevated and I have read even fibromyalgia and other non serious things like just being older can cause a slightly elevated RH value. The sed rate doesn't bother me. When it's been elevated before it has always gone back to normal.
Any suggestions or input appreciated. When I read some of your stories and symptoms and diagnoses I feel like I am being a wimp and whiny. That's probably the anxiety disorder part of me kicking in. Anyhow, if anyone with RA or who knows what their sed rate and RH values are when they have been diagnosed with RA I'd be curious to know. I have Googled for it and can't find anything really.
I appreciate boards like these for the honesty and support you people give each other. I have a lot of time on my hands, and I try to be supportive of those on the forums where people have fibromyalgia or other things like I have had for so long. I have Dry Eye Syndrome also, but all tests for Sjogren's have been negative. In advance, thanks for any input. I was here last at least a year ago, but plan to come back and add anything to help others and also perhaps myself, depending on what shows up in the future...
Re: Reposting As Question - RH Level Up, Sed Rate Up, Confusing Symptoms - Worried
False positive RF tests increase with age. It can also be elevated by passing bacteria, age, etc. Fibro is a syndrome, not a disease and does NOT lead to AI diseases. Many people with AI diseases have fibro, but I suspect that a great many patients are diagnosed with it when they have AI diseases simply because they hurt and not enough credence is given to the fact that AI diseases do, in fact, cause pain. Be that as it may, since I'm only a patient, your SED rate fluctuates quickly and rises if you have a passing cold, cirus, minor infection, etc. The fact that your CRP rate is not elevated is a very good sign. Another thing to consider is that the pain and swelling oin your shoulder is not in the other. Most AI diseases have symmetrical symptoms. They appear on both sides of the body, as opposed to just one. You also may be looking at a touch of osteoarthritis, which is the most common joint disorder and is due to aging and wear and tear on the joint. I do not have rheumatoid arthritis, but one of the other forms. My SED rate and CRP rates were very high when I was first diagnosed, SED was over 50 and I think my CRP was around 20. I never did have any significant RF. I can sympathize with you on the dry eye! I have sicca, or secondary Sjogren's and I really struggle with dry eyes when the seasons change. I hope this alleviates some of your worries, and I hope that your shoulder gets better. BTW, I think it would be the ITP that would be the autoimmune disease. It is true that if you have one AI disease, it increases your chance of having another, but those chance still remain very small. Most people only have one and will never develop another.
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Re: Reposting As Question - RH Level Up, Sed Rate Up, Confusing Symptoms - Worried
Thanks very much for the reply. I must say that I've read tons on both Fibro and have actually studied medicine since age 12 - seriously studied it. My GP often lets me tell him what i think is going on and what my dx is when I see him with anything new, and then tells me if he agrees or not and then we go on to blood work, etc. Probably 90% or more of the time I am right on with him and with what ends up being the diagnosis or problem. I can't ever predict lab values of course. But I know my body well and I think being a good "advocate" for ourselves health wise is so important, since there are many docs out there who simply do not spend much time listening or answering questions! Or there are those with the big egos who hate it when a patient has good knowledge about their illness or body. I go to them ONCE usually.
About three years ago I had a full "Blood cytometry analysis," along with other antibody and other tests that were specific to any and all cancers and AI diseases. Everything was normal except my platelets, and they tend to "clump" but are otherwise normal, as is my spleen, etc. Mayo's labs did all of the blood work. So I tend to feel somewhat relieved by that fact. That was done to figure out the thrombocytopenia, since the platelet count fluctuates so much.
I know and have been told by hematologists that high stress levels or even mild illness like a cold can suppress the RBC's and mess with a plain CBC, making things look somewhat low that are actually not normally low or are not low due to a dis-ease. Stress, as most of you already must know, can make all kinds of skin and other inflammatory diseases and conditions flare and be much worse. That's why I learned meditation and try to get a really good sleep each night.
Anyhow, I'll see what comes up in the next few weeks as I am tested again to see what has changed and how. As for the fibromyalgia, I have had medical texts on it for years and often know of symptoms that the doctors have not heard about because I have read these books and been on forums where people with the syndrome have shared their common and sometimes odd symptoms. And by the way, sicca or Dry Eye Syndrome is common with people who have fibromyalgia but without any Sjogren's. I dislike it because I get corneal abrasions sometimes. I also have blepharitis, so my eyelids sometimes will stick together during sleep. In the morning when I pull them gently apart, I can get a small scratch/abrasion. So I go through a lot of lubricating drops!
Thanks again for the input and encouragement! I'll check back in when I have more information to share.