Very high RF & symptoms, can anyone relate / have gotten diagnosis?

[WK1010]

Hello everyone. As the question says, I'm interested to see if anyone can relate to what I'm experiencing and what diagnosis has been given.

So, I have an elevated RF latex test of 450 (tested twice) and IgM that is 3.1 (above normal). I also have an elevated calprotectin of 90. Just some info that could be relevant.

I experience NO joint pain and NO swelling. I'm a 20 year old male. I experience the following symptoms:

1) Debilitating Fatigue and sleepiness. Feel drugged / sleep deprived all the time despite hours of sleep. Fatigue is a bit relieved by a nap for about 1-2 hours but returns back. I experience worsening fatigue that lasts for days after slight exercise and also after taking a shower.

2) Memory and concentration issues, cannot think clearly and think slowly...I feel slow and sluggish

3) Constant muscle discomfort, dull feeling that makes my muscles feel fatigued but not painful nor difficult to move. It's all over..it's like having brain fog but the fog is covering my muscles if that makes sense.

3) Flatulence

4) Cold hands and feet (but they don't change color)

5) Numbness and tingling in hands and feet

If anyone relates to this, or wants to share their story, I'd be happy to hear it. I've had an appointment with a rheumatologist and he said everything looked fine, I could move easily. He did notice my hands were cold and took a look at them. I'm unsure if everything was ok with my hands...it was a bit unclear. He also ordered for many blood tests to be taken and one of them was slightly positive, but I have to wait until the rheumatologist comes back from his vacation to get an interpretation of this.

[Deniseelk]

Sorry to hear your list of aliments, must be very troubling on a daily basis.

Not sure how blood results relate but just wondered if docs have looked at constipation? My mother had a chronic version ( hers were an unfortunate side effect of the drugs she was on) but all your symptoms match!

I wish you a speedy and easy diagnosis. I think you will find this site helpful and supportive.

[WK1010 in reply to Deniseelk]

Thank you for your comment. Hopefully I'll get a diagnosis soon. I think maybe one or two more appointments with the rheumatologist and I'll finally have one. I have had some issues with constipation, but I think it's a side effect of the medicine I take for acid reflux. Could you clarify what you mean when you say all my symptoms matched? Did constipation cause all these other symptoms for your mother?

[Deniseelk in reply to WK1010]

Hi! It seemed interesting that my mother also had the brain fog, slow thinking, more burping rather than flatulence, cold hands and feet , don’t particularly remember her mentioning pins and needles, she was definitely “ achy” in her body and was always proping with cushions for comfort ( she did have osteoporosis so that could have been that issue). She was certainly fatigued and needed naps in the day ( she was in her 70’s so i’m sure not compares to you).We always felt that her chronic constipation was due to all the meds. I have read up in the past that the toxins in the meds can cause like a type of toxic memory issue. Not a surprise really. I guess i’m Saying that if your symptoms, in part, are due to say constipation if the GP can sort that for you some of your list of ailments may go??? I do hope you get your answer soon. Be kind to yourself, don’t push yourself too much but do keep your body moving, when possible, eat well, sleep healthy and try a few things to de-stress in meantime. Best of luck.

[Matilda7]

You might want to look up Sjögrens and lupus....

[janmary]

Don't know anything about the blood tests,, but was listening to a BBC radio programme about Chronic fatigue Syndrome (also known as ME) and it sounded just as you describe.

[WK1010 in reply to janmary]

I too think CFS is the best match for my symptoms..it's like a perfect match. But many conditions mimic CFS. I'll have to rule out a couple of more potential causes before that diagnosis can be made I think.

[Hidden in reply to WK1010]

The high RF could relate equally to any rheumatic disease - for instance Sjögren's and Lupus both often show in high RF and/ or ANA. There is a more specific panel of bloods usually taken for autoimmune disease antibodies called ENA. There are tests that can show up more specifically for each disease but don't always. When they don't then you will usually be classed as seronegative.

The problem is that, as a young man, the likelihood of having a rheumatic disease is lessened - so many doctors won't consider this unless it's glaringly obvious i.e you have severe back pain or a clear butterfly rash or kidney disease called Lupus Nephrites or have visibly hot, swollen joints or severely dry eyes for no apparent reason i.e medications.

However the likelihood of having a connective tissue disease may be less but the possibility that you have the early stage of one or a mix of these diseases is still there because fatigue is a classic symptom of all autoimmunity.

So, if you do get put back to primary care then you will have to push hard for additional input as a young man with chronic fatigue - because once you get this label it tends to stick and they may not look hard enough at new or worsening symptoms, particularly with a view to diseases such as Sjögren's and Lupus.

So I suggest you read up and ask for and keep copies of all your blood tests and clinical letters. This way you may notice potentially significant changes, that might match up with your symptoms where GPs may not.

Also I do hope that you have had your thyroid bloods done? If not this would be worth asking about. Best of luck and I'm hoping that, if it is CFS, you make a full recovery in time. Meanwhile I'm sure you know that sticking to a good, balanced diet, possibly trying gluten avoidance and carefully noting any improvement (Ceoliacs can present at any age and effects both sexes equally - and can cause CFS and tingly sensation plus GI problems), plus having gentle exercise daily - will all really help whatever turns out to be wrong.

[WK1010 in reply to Hidden]

Thanks for your reply. A rheumatological illness doesn't look obvious for me, it took years before a doctor did an autoimmune panel with immunoglobulins as well. Reading up on different illnesses and keeping my blood test results is something I have been doing for a while. And while I agree some healthy people have elevated rheumatoid factor, I think it is more common for the elderly. Also, I've read that the higher the RF, the higher the probability of some sort of disease. I have tested thyroid several times, along with vitamins and minerals. Celiac disease has been ruled out by blood tests and biopsy. I haven't started exercising, as I got sooo much more tired the last time I started light workout. I can try making it even lighter and gradually increasing intensity over weeks / months.