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Old 4 Jun 21, 08:47 AM  
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Floridatilly
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Originally Posted by Tigger71 View Post
Saw a rheumatologist the other week and he thinks I have Rheumatoid Arthritis - getting some more bloods done (my Rheumatoid Factor was 305) and seeing him on Tuesday 8/6 again.

I feel rubbish at the moment to be honest so its good to get a diagnosis obviously (if its RA or something else) but i dread having a chronic and auto immune condition… my mum had Fibromyalgia so I have seen what fatigue and pain can do to you. I am only 50 but my body feels like its going on 80 and I am soo tired all the time. Apart from this I also have Hypertension, Postural Hypotension, IBS, GORD (reflux), Drye Eye Syndrome and floaters/flashes in my eyes.

So feeling a bit down - wonder how it will impact future trips to Disney etc. If anyone else has RA - how do you cope?

Also - what questions should I remember to ask the rheumatologist when I see him next week? He mentioned potentially giving me a steroid injection - can I drive home after that?
Firstly, I am not an expert and still on a steep learning curve so please get professional medical advice 💗
Your mention of GERD, IBS and dry eye plus the inflammatory markers in your blood results are screaming IBD to me. Have you had a recent colonoscopy/endoscopy? When was the last time you had your stool calprotectin levels checked? If they haven’t been tested recently I would definitely start with getting the stools tested.
Before my son was diagnosed with Crohn’s, allergies, IBS, GERD and dry eyes were suggested by the doctors.
The inflammation in his intestinal tract has now effected other parts of his body and his blood tests plus scans have confirmed juvenile arthritis. But this is caused by the Crohn’s disease and the treatment is the same for both, Azathioprine daily and monthly infliximab infusions with a high dose of steriod infusion.
He also takes vitamin D, iron and vit B because even though the steriods have made him overweight he is actually still malnourished which in turn makes him feel rotten.
So my worry for you, as you feel so bad at the moment is that your body may not be absorbing nutrients as well as everything else.
Good luck with everything 💗
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Old 4 Jun 21, 08:53 AM  
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Ilovedisney
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I have fibro and suffer alot of chest pains. They have diagnosed costocondritis. It is common in people with fibro.
It isn't serious but the pain is really bad at times
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Old 4 Jun 21, 11:15 AM  
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Tigger71
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I was checked for IBD and Chrons toward end of last yr and (I had a ”top and tail” both endoscopy and colonoscopy) and it came back clear.

But you are right in that my body doesnt absorb nutrients well - I have had Vit D and iron deficiency in the past and low, but not deficit Vit B12. So I take extra Vit D, B12 and a multivit that contains iron. I noticedon my last bloodtest that Vit D started to creep down again (but not under the min. value).

I know that my fundoplication surgery that I had for my GORD can make it more difficult to absorb some vitamins - also think the IBS contributes.

I’ve read your threads on Mason - must be really hard for someone so young. xx
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Old 4 Jun 21, 12:30 PM  
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Hey lovely.

Sending big hugs!

I recently posted to say I have been diagnosed with psoriatic arthritis which is essentially RA but with psoriasis as well.
Not the news I wanted having just turned 35 but if that’s my lot then I have to get on with it.

I have been out onto methotrexate tablets and folic acid and need to have bloods taken fortnightly at the moment to check my body is handling it well. I’ve had a fair bit of nausea/headaches associated with the medication but nothing unmanageable.
I’m only two weeks into treatment but hopefully there will start to be an improvement!

I had a steroid injection directly into the joint, and had to rest it as this was done without local anaesthetic. Sadly mine crystallised and caused more issues, but I know a lot of people experience great relief having it done.
I’ve also been on steroid tablets for 3 weeks to try and calm it down. But my arthritis flare (only one finger severely and my neck mildly) is being stubborn and not responding to anything.

I have joined some Facebook books for support. What I would say with those is to “unfollow” them. That way they are there when you need help and support. Or if you feel able to offer it to others on a good day but that way you aren’t getting bombarded with posts from people struggling (which tends to be when people post on these types of forums) and can be a bit depressing.

My PM is always open if you need friendship/support from someone else recently diagnosed.

One step at a time. Xx
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Old 4 Jun 21, 12:35 PM  
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Just wanted to add. I’ve created a group in the social threads section for us to be able to keep in touch and make friendships with people who know how it feels.
Feel free to pop a message over there if you want guys xx
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Old 4 Jun 21, 01:45 PM  
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Floridatilly
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Originally Posted by Tigger71 View Post
I was checked for IBD and Chrons toward end of last yr and (I had a ”top and tail” both endoscopy and colonoscopy) and it came back clear.

But you are right in that my body doesnt absorb nutrients well - I have had Vit D and iron deficiency in the past and low, but not deficit Vit B12. So I take extra Vit D, B12 and a multivit that contains iron. I noticedon my last bloodtest that Vit D started to creep down again (but not under the min. value).

I know that my fundoplication surgery that I had for my GORD can make it more difficult to absorb some vitamins - also think the IBS contributes.

I’ve read your threads on Mason - must be really hard for someone so young. xx
I am so glad that its not IBD then 💗💗 I am a bit consumed by it at the moment so automatically thought that.
I hope they can get you on the right medication and you start to feel some relief soon x x
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