At the start of tests - very confused and worried

Hi there

I guess I'm on here to get things off my chest as I do not know what I'm suffering with yet. I went to the doctor on Thursday for tests to eliminate obvious problems before we go to the next stage. At the moment the possibilities are that I have fibro, ME, lupus or similar.

I know I can't self diagnose, and I guess me getting things off my chest just makes it easier to cope a little.

I've been a sickly person all my life. As I child I had measles, chicken pox, Scarlett fever, mumps, thrush, cystitis. I bruise so easily. I've dislocated both knees, my shoulder and my jaw locks constantly.

In the last three months I've had 3 colds, the flu and gastric flu. I'm now having my 4th round of a throat infection. It usually takes up to three weeks to recover from a basic cold.

My joints hurt constantly, I have costochondritis, asthma and eczema - so taking steroid based treatments. Walking is hard, sleeping is either light and restless, or heavy and impossible to wake from.

I constantly have migraines and often wake with them. My job is heavily deadline focused - I once was very focused and always on the ball. Now I'm easily distracted and find it impossible to get one simple email drafted.

I can't travel in rush hour as I sweat within seconds of getting on the tube. My appetite varies from gorging on food through to not being even able to stomach a sip of water.

So now I'm waiting for the results before we go on to the next stage and I am so so scared. it's like everything I've been suffering with all my life is suddenly coming at once. I don't know whether it's bad luck or I genuinely have something wrong with me.

My mum suffers from fibro and my cousin has ME.

I don't know what I want to get from this post - I just know that I'm scared and uncertain of what's going to happen next.

thank you for letting me share my thoughts.

x

4 Replies

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  • I really feel for you, and understand how scared you are. But in many ways at last getting a diagnosis may be helpful for you. You sound as though your immune system isn't great, whatever they find. And that isn't a case of bad luck, it's a real physical problem. I know how hard it is coping with a life change (I've been through it, many years ago) but have you considered easing up on the work? Stress is definitely something that exacerbates all of the conditions you mention. You might think will-power will get you through, but at the end of the day your body will tell you a very loud NO, and if you resist, it may lead to an ever bigger crash - I'm sorry if that sounds an even worse threat, but your health has got to come first. I wish you lots of luck in getting through this. People here can help because they understand what you are talking about and won't judge, whatever you want to say.

  • hi Ariel

    I hope you feel a little better for having got things off your chest here? I don't know if any of the following will be helpful to you.....

    I believe that one of the hardest things for all people is living with uncertainty, and you are in a process of having to wait...That's hard, but temporary.

    I found that having my diagnosis ( for 6 months now) has been helpful as it has given me some understanding of past health issues and some hope for managing life in a way that takes care of my health needs, now that I know what they are.

    Things have changed, now I am seeing how my body handles the drugs, with the aim of going to work again and feeling purposful...this is not as straight forward as I would like, and importantly, I now have the appropriate support.. I have cultivated a great relationship with my GP. I make sure I have two or three appts. booked to she her, as it is easy to cancel, and I haven't needed to yet.

    The drugs worry me, I personally think ( but do not know) that I am in this mess because of childhood illness and strong drugs back then. Anyway, to have myself feel better about the drugs I am seeing a acupuncturist, she has settled my sleep and dissapears pain, inc migraine and some side effects. ( she is based in Brixton if you are interested)

    I really understand what you say about food, and maybe it is a placebo...I looked up best foods for SLE and found low GI foods, so whilst spending so much time at home I make sure I cook and eat ( & freeze for the slow days) Low GI foods, this has had two results. Most importantly I feel I am in control of something! I had a salmonella (SLE related) and lost the hunger sensation, but now I eat anyway. As the idea of eating for my energy, doing something to combat the fatgue myself, feels good and I am certaintly up for doing what feels good. I have maintained my weight on 6 months of steriods, which is a great result for me, I wouldn't have been happy to have gained weight, I am after all female, with a wardrope filled with clothes I like. And I don't need any more reasons to be unhappy.

    I don't know what to say about the tube,, a busy tube is a nightmare! Often makes me feel sick, when I was working I'd go early & return late to aviod the rush, but then I seem to be really smell sensitive, which can trigger a headaches & nausea, equaling a "bad day'.

    I would say what has helped me is being patient with myself and letting others support me. My GP plugged me into a range of services, I found the Expert Patient Programme particulary useful.

    Good luck xx

  • Thank you both so much.

    Funny enough, I met a friend of mine today who I spoke to about what's going on. She said that she suffered from ME, but through a nutritionist found she actually had candida. I was amazed at how many symptoms from candida are like fibro, lupus and ME. It made me realise that I need to calm down as I truly have no idea what is wrong.

    I found her candida symptoms fascinating though - especially as she specifically asked me how I reacted to pasta and alcohol. Pasta makes me feel very ill and look about 6 months pregnant, I pass out or throw up with most alcohol (and only at the first drink).

    I agree kulie13 - whatever is wrong, my immune system is broken. These are the first steps and the one thing I have noticed is that whatever it is - there are lots of wonderfully supportive people out there, especially on forums like this one.

    And I have thought about seeing an acupuncturist, I guess I'm holding out until I have a better idea of what's wrong...I don't want to trigger anything else.

    Thank you so much for your answers; it's really helped.

    x

  • Happy to have helped:) Glad you're feeling calmer.

    I'm no expert but it seems candida is often linked to poor immuity.

    I also can't drink or eat pasta, actually any white processed foods, especially white wheat and sugar.

    Ive worked out how to enjoy being the only sober one at the party, it's taken a shift in my attitute and some "energy management" to ensure I get out of the house. I love dancing as that uplifts me, most people assume i'm as drunk as they are, which is often a lot of fun.

    x

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