New diagnosis... now what?

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

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New diagnosis... now what?

Postby AnniePB » Wed Jun 19, 2019 3:11 pm

Hi everyone

I’m new and this is my first post. I received my diagnosis yesterday after being ill for the past 18 months and very ill since January.

I also have IBS and bad gastric reflux so cannot take many painkillers. At the moment I take co-codamol if I’m going out as I find a combination of movement,and rest makes life manageable if I’m at home. The affects on my gut from painkillers is worse than putting up with pain. The worst thing for me are the flu-like feeling, pins and needles, the overwhelming fatigue and that my legs swell and become leaden if I walk any distance (about 50m). I use a wheelchair to get out and about but don’t have the strength or energy to self-propel so am a bit dependent on support and sitting hurts!

My consultant is keen for me to take CBD oil and I’ve been taking 20mg capsules (10 mg twice daily) for two months-ish. I’m not sure if they are helpful or not but have been told it takes a while for any effects to be noticeable. I’m also taking an over the counter Vit B complex plus magnesium on recommendation by my GP. She’s also recommended I follow a gluten free diet for my IBS. The rheumatologist is referring me for hydrotherapy.

So far everything is costing me money and this is a problem as I’m now only on SSP and will be retired on ill health grounds in July. I’m in the process of applying for ESA, have been refused PIP so am I for mandatory reconsideration, and paying for all this stuff is expensive. I’d love to try acupuncture but can’t afford it. :cry:

So... my questions:
what else do I do?
What drugs to people find helpful?
What should I be asking my GP for?
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