Hi all, I'm new to this forum and here because I've been experiencing various ongoing physical symptoms - mainly involving digestion and bones/joints. I have had chronic reflux/GORD for many years and mild joint stiffness, but recently I have found my symptoms to be worsening.
Over the past year or so, my joints have been sore, 'click' a lot, bones feel tender to touch and feel weak - this seems to be mainly affecting upper joints eg spine, neck, breastbone, sternum, arms, wrists, fingers - some symptoms in lower joints, but not too bad. Reflux has also been worsening over the years and is mainly left sided, with an almost constant burning sensation. This all accompanied by ongoing fatigue and a 'hot' feeling, but no fever. My ESR levels have always been slightly high, but in recent blood tests the CRP level was higher than normal, Inorganic phosphate levels a bit low (0.75), platelet count a bit high (430). Vitamin D is in Adequate range.
Over the years I have had many diagnostic tests, but no diagnosis.
Could this indicate some sort of inflammatory joint condition? Or systemic condition given the digestive symptoms? Anyone else experiencing similar symptoms?
Thanks in advance
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ZM1980
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Could be, but even though I've had years of various symptoms, no GP has ever mentioned Fibromyalgia or Chronic Fatigue type illness. My bone profile and CRP have been abnormal and symptoms seem to be worsening over the years, so not sure if it's something not yet diagnosed?
It took 25 years to get a diagnosis for me. In some part this is because I only once went to the GP and complained of the symptoms that eventually proved to be *the* symptom that pin pointed what the problem was.
For years I would tell the GP about my extreme fatigue and my achy joints and my absolutely awful IBS and I was told it was ME, depression, nothing at all just something in my head.
During my second pregnancy I experienced terrible hip pain and it didn't subside after my daughter was born. When she was about 3 months I had a bout of very bad back ache that got so painful I went to the GP where I was given pain killers and told to rest.
The back ache continued but because it went away if I moved around I never mentioned it to the GP again. But that was the main symptom of what was actually wrong with me.
I would say that next time you see your GP book a double appointment, tell them exactly how this affects you (can't work can't socialise, whatever impact it has on your life) and then give them a sheet of all your symptoms.
My disease (ankylosing spondylitis) is a bugger to diagnose as often bloods are all completely normal. It took an MRI to show the very active inflammation in my spine as my CRP and ESR were always fine.
It might be that a seemingly insignificant symptom holds the clue to what is wrong with you and if you've suffered for a long time you should maybe suggest a specialist referral.
Hi Jnmmum, thanks for your reply. Twenty five years is a long time to go through symptoms without a definitive diagnosis - I seem to be going the same way! I'm glad you finally got diagnosed, though, hope you are getting the treatment you need.
I think mine is inflammatory, as my bone profile is abnormal and CRP has been high - when I mentioned this, the GP said it's not high enough to cause my symptoms - but I think everyone is different. The digestive symptoms (mainly upper) have been horrendous and together with the joint/bone symptoms, sometimes I feel so unwell. Will be having a follow up blood test beginning of next month, so will see how that goes.
I have suffered alot in the past with reflux / GORD. I was on Lanzoprolo tablets to help which it did. I also felt the fatigue and stomache pains. I ended up going to York Tests to get a test done it I was intolorent to anything. It cam eback that I was intolorant to cows milk. Ever since I have stopped drinking/ eating anything with cows milk my reflux has gone.
Not sure if this would be the same for you but thought it would be worth mentioned.
Yes that's true symptoms could be related to food intolerance - makes sense, especially if consuming foods that you might have a mild intolerance to, you might not notice symptoms. I'm sure I have a mild dairy intolerance, as I can have a certain amount, but too much will make me feel bloated.
Did you have any other symptoms aside from digestive?
It sounds to me like it could be fibromyalgia. Perhaps join some Fibro support groups online and see if you can relate.
You can’t test for Fibro as it’s diagnosed by pressure points and ruling things out, it sounds like you’ve had a lot of tests so far so perhaps something for your doc to consider.
Unfortunately not many treatment options- mainly just medications to try.
Thanks for the info re Fibromyalgia kjaylah - I do seem to have some of the symptoms, but not sure, as my blood tests have been abnormal (bone profile, CRP), but Rheumatoid factor normal. I will be having follow up tests in a few weeks, so will see what the levels are then.
Not formally diagnosed no, I have ME/CFS and diagnosed at 16, but my pains have become increasingly worse since then, I’ve been tentatively diagnosed with Fibro by a junior GP but waiting for a referral to come through for rheumatology for a formal diagnosis (unfortunately a long wait)
I do have ongoing acid reflux as well, I’m on 40mg of esomeprazole a day.
Have you checked your uric acid level? If my guess is correct then you may hqve acidity problem for some years.Your are having Gout like symtom.change your diet.avoid acidic food and protein. Try for vegan diet and sleep on time.eat plant based vitamin C but not acidic food.lemon fruit family has vitamin C but it is acidic.so choose well.like moringa leaf powder.it may work.but first check your Uric acid lever in blood.
Hi, I haven't had my Uric Acid levels checked - but I think you're right about the acidity levels causing symptoms. I won't lie, I do tend to have a lot of acidic foods (no alcohol, though, as it affects my digestion)! I hadn't really considered Uric Acid levels, but will ask my GP about this (test). Thanks
maybe PMR (poly myalgia rheumatica..it can come on over the decades. probably must be over 40 by most will to get diagnoses as such until 55. If it is it will probably keep getting worse until you get this diagnosis when you can no longer turn over in bed, get out of bed or lift the doona on yourself.... and feel like you've just been tortured for weeks in the game of thrones on awakening (athat's how I was by time diagnoses at age 60). maybe it is a dairy allergy though.. mine might be too. and PMR is a=diagnosed by exclusion and now knows what cases it..could be allergies
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