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Increasing and new symptoms

Hi all
I hope you are as well as you can be.
I promised to give an update on my progress so here goes. 😊
I had some stomach issues in the past few months so had to have stool samples checked for IBD.
The first sample came back with a reading of 110. The scale is under 50 is normal, between 50 and 150 is elevated but classed as a “grey” area and can be called inconclusive, over 200 is high and an indication of active IBD issues.
As mine was elevated I was asked to do a second test and it came back as under 30, which is apparently as low as they can measure. So all in all, quite good news and a relief.

In between the tests I actually realised that I was eating a lot of cabbage, as cabbage is healthy, right?
Well despite being good for you apparently it can also cause a lot of digestive issues.
I also, voluntarily decided to try a gluten and lactose reduced diet.
After a week or so I noticed only a very minor change in my stomach issues.
I discussed the test results with my GP and asked if he thought it was OK to try a strict gluten free diet, as I have seen many people complain that wheat makes them feel awful and has been linked to inflammation. (I thought I would try gluten first as it seemed an easier and be to start with compared with lactose, or both).
So I’ve been strictly gluten free for around 10 days now and I have to say my stomach is definitely a lot better. I know it can take a month to see a real difference and to allow any healing to take place but so far it does seem to be helping already.

I have however developed other symptoms. The insides of my arm/elbow joints are agony at times. Sometimes I seem to not even be able to pick a jug of milk up.
My back, both upper and lower, is very stiff an painful.
My inner thighs are hurting a lot of the time.
My neck feels weak and I am suffering from real fatigue at times.
My usual symptoms of very sore hands and feet are still there and the worst they have been since I started Enbrel, 6 years ago. (I thought it was 7 but my rhumy nurse confirmed 6)
She was very good when I finally got my appointment at the hospital and was shocked it had been a year since they saw me last. She did confirm that it could be a case that the Enbrel is not as effective as it first was.
She stressed not to worry and that they had a “cupboard full of wonderful drugs, some I won’t even have heard of” which were her exact words 😊 and that they would find a plan B or C or D for me.
I must remember to take her some chocolates at Christmas 😁
I have a neck X-ray in a week and another appointment with my nurse in 4 weeks to discuss where we go from here.

All said and done it’s quite positive but I have to admit the worsening and new symptoms are getting me down a little at the present time.

Oh well, onwards and upwards, it’s the only way. 😊

Thank you for reading and take care

  1. Hi @Greg. It sounds like you have a wonderful team of doctors. Many people find that medications that helped for years suddenly become less effective. I hope you find something better soon and that you get some relief. I am a big fan of cabbage as well (raised by a German mama) and I used to eat lots of it, until ... I developed severe acid reflux. It was so bad, it scortched my throat. Cabbage can be terrible for those of us with digestive issues as can broccoli, onions and freshly made tomato sauces. I still eat all of those things, but in moderation and my acid reflux is under control with no meds. Let us know how your x-ray goes. Thanks for the update! - Lori (Team Member)

    1. thanks Lori. I meant to say the X-ray is for my neck as she suspects that there may be an issue with compressed discs causing nerve problems. I have also had problems with a numb right arm and right leg lately. I’ve been doing a lot of reading about the Vagas nerve lately and doing some gentle stretches to try relieve some other strange symptoms I have been having.
      Sometimes I just feel plain ill. I can’t describe it really, what I said to the doctor was I just feel plain wrong. Light headed, a little sick, weak legs and arms, uneasy stomach, just so many symptoms. Sometimes all I can do is lie down to take the weight of my head off my neck and it tends to ease everything and I feel a little better.
      I’ve had problems with my neck for decades, originally with severe pain and just couldn’t turn my head at all. Back then they thought it was perhaps a damaged disc but I was never sent for an X-ray. It was just a case of wear a neck brace from a pharmacy and take some paracetamol.
      I really hope this coming X-ray shows some results and that something can be done about whatever it is.
      Maybe clinging on to too easy a solution to all my issues but it’s worth a go.
      I feel like I’m wasting the healthcare teams time but I would just love to feel even a little bit better. That would do for now. 😊
      Thanks again and take care

  2. Hi , just catching up on your post now! I'm glad the nurse was supportive and encouraging at your appointment - that can really make a difference. Hopefully in four weeks they'll have some ideas for bringing you some relief again. It sounds like you're having a horrible time with everything. Feeling down about it all is totally understandable. I hope you'll continue to share here anytime you need to - we are all here for you! That's good news about the IBD test... I wonder if the new diet will have any impact on your PsA symptoms? Hope the X-ray goes okay this week! -Catherine, Community Moderator

    1. Thanks for the support Cathy.
      I actually think the new stricter gluten free diet is helping things. The first week I felt a lot better and wondered if I’d found the “silver bullet”. This week is not as good but still on the whole I think things are a little better. 😊
      I do think that I will likely be on a different biological soon but I think the outlook is hopefully all good.
      I’m staying positive anyway. I’m off work this week so that’s always good 😁
      I’m essentially still shielding, have been working from home since last March. Might take a trip to the Costa-del-kitchen this week or visit the cupboard under the stairs night club. Hehe. 😁
      Thanks again and stay safe

    2. , that's so interesting! I have heard a few people say that going gluten-free has helped them. I hope you'll have another week like the first one where you feel a lot better! I feel like anything that makes even a slight difference is worth it when you're in a lot of pain.

      Haha, you have exciting plans for your week off!! I am still basically shielding too. I feel so weird about the idea of going out and being around people... I did get my second jab though so I'm pleased about that. Make sure you take it easy when you go clubbing! 😉 -Catherine, Community Moderator

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