Does anyone else have so many problems?

[manners]

Hi all! This might be a long one, but bare with me because I could really do with some feedback.

I was diagnosed with Colitis in 2009 after multiple hospitalisations with amoebic dysentery when I was living in South East Asia. That was all horrible for a while, but it came under control after hospitalisation thanks to Masalazine and I've only had two flares since, all great so far. However, I've had such a heap of other health issues since then and I feel like I have too many different diagnoses to all have happened separately; the maths just doesn't add up for me. So here's what's on my various medical notes:

- Ulcerative Colitis with ileum involvement

- Enteropathic spondyloarthropathy

- Fibromyalgia

- Asthma

- Chronic dyspepsia

- Recurring achilles bursitis

- Reynauds

On top of that, in the last year and a half I've developed a really extreme reaction to viruses. At the end of 2014 it was cold > chest infection > asthma flare > insomnia > pleurisy (yes the Victorian illness) > fibro-flare. This year it was cold > sinus infection > asthma flare > insomnia > chostochondritis (apparently) > fibro-flare > major reflux causing gland problems, loss of voice (for 3 months), and my chest is still painful after 4 months.

Because of the chest problems my GP referred me back to the rheumy, who ignored the chest problems and was like 'yup firbo', but I just don't feel like I can have all of these problems separately. Surely there's something that connects them all? I also notice that I have a really blotchy face, which I used to put down to hormones, but I'm 28, so that's pretty unrealistic.

So my questions are:

- Does anyone else have a plethora of different diagnoses like this?

- Does anyone know what this is on my face? It's worse after a shower, but that's all I have worked out.

- Can my full blood count look normal if something else is going on?

- Does anyone else never have a fever, even with confirmed severe lung infection? My GP suggested it could be the mesalazine but I can't find any info about this anywhere.

[willow24 Administrator]

Hi hun, you certainly going through it. The rash on your face looks a bit like lupus, your GP should be able to blood tests, and the rheumatologist should help too. these blood tests are very specific and not done with the routine blood tests.

The enteropathic spondyloarthropathy and dyspesia is more likely due to the UC, and having 1 autoimmune disorder makes you a lot more susceptible to another. I have Crohns, enteropathic arthritis,GORD, and had a drug induced lupus due to medication for Crohns - luckily on changing meds it stopped. have you tried azathioprine or mercaptopurine? these can also be very helpful, but do come with lots of side effects and your bloods will need monitoring often.

hope this helps x

[manners in reply to willow24]

Thanks for replying!

I guess I just thought that after some diagnoses and subsequent management I wouldn't have new things suddenly pop up, but it makes sense that having a confused immune system would lead to more problems. The Rheumy didn't ask about rashes, so I couldn't pluck up the courage to ask her about the pictures. I might ask my GP instead, she's less terrifying. Can I just ask about lupus tests then, or will I sound paranoid? I'm always afraid to ask about more serious problems in case I'm being ridiculous.

I refused azathioprine because the side-effects sounded worse than how I felt at the time.

xx

[willow24 Administrator in reply to manners]

Yeah just mention to your GP that somebody commented on how the rash resembles the butterfly rash of lupus, and could you be tested as due to having autoimmune probs it makes you a lot more susceptible to lupus. Dont think your being ridiculous, you have a right to healthcare and a right to treatment. Nobody knows their body or illnesses as well as that person. If something is not right keep on until something is done. I used to be timid with Dr until I saw a certain GP - he was terrifying and I had avoided him for yrs, but he was actually fab, and he explained to me what I just wrote. I think its important to have a GP you can trust - even if it not your 'named' GP

The azathioprine will help dampen your immune system attacking itself, and also helps other meds become more effective. I was on azathioprine for yrs, but due to becoming neutropaenic (out of the blue) I was switched to mercaptopure and 10yrs on not had any side effects. I know we dont all respond the same to meds but its worth considering, and better than steroids. xx

[manners in reply to willow24]

Almost everything is better than steroids, that's for sure! It does make me sad that so many people have to deal will constant illness, but it is really helpful to hear other people's experiences.

I know exactly what you mean about GPs. Mine is really wonderful and although my Rheumy was really bad, I saw my new gastro yesterday and he was really wonderful too. I explained the horrible reaction I get from infections and he very intriguingly said "hmmm, yes, but are the infections causing the dyspepsia or is the dyspepsia causing the infections?", so I've had a look at GORD and he's absolutely right, most of my current problems could be GORD. I had no idea it could be so bad, but the asthma flares, the lung infections, the sinus infections, the loss of my voice, the nausea, loss of apatite, chest pain, pneumonia, pleurisy... all of it can just be terrible reflux. I feel really excited at the prospect that it could be because it's actually treatable, unlike fibro, which is just a constant pain in the everything.

I'm going to have the manometry and 24 hour ph monitoring test and hopefully that will help stop the cycle. I've made an appointment to see my GP to discuss the rheumy and the rash, so thanks for giving me the oomph.

Thanks so much!

[willow24 Administrator]

Your welcome hun, this forum is still quite small but we do get some good advice and knowledge from each other. As a nurse I obviously enjoy helping others and with this forum

[willow24 Administrator]

I can also give personal experiences as support. Please let me know how you get on and share your experiences with other new and old er members x