ME/CFS I feel like my body is failing me

[Flamingo84]

I was diagnosed with ME/CFS when I was 24 but it stemmed from a case of Glandular fever aged 7. My flare ups are caused by increased activity, alcohol and stress. I cut out alcohol in my early 20s, stopped socialising and kept activity to uni/work and essential errands with a few fun trips thrown in.

Through my 20s I tried to go out, have holidays but it would cause health issues lasting weeks. As I got a proper job after uni I fell foul of sickness policy and my life became work and basic life maintenance. Eventually even this became too much and I finally got a diagnosis. This led me to working 4 days a week so that I was able to balance my life a little more.

In my late 20s I got diagnosed with arthritis in my foot. It gets sore and can make walking uncomfortable especially in the winter.

In my early 30s I was diagnosed with thoracic outlet syndrome. The nerve/blood vessel in the neck gets inflamed and trapped causing stiffness/swelling and pain in the whole arm. It’s in my dominant hand so I have to use my non dominant hand to use a computer mouse at work. I also have to do physio every day to keep the pain and swelling from returning.

I had a baby last year now in my mid 30s. The birth was straightforward and I have surprisingly coped well. However, I had hip pain at the end of my pregnancy and continued to get worse instead of better. Walking uphill, up steps or bending became excruciating. 6 months after the birth it has been diagnosed as Sacroiliac Joint Dysfunction. The joint that connects the hip to the spine is like a shock absorber. Mine is too mobile so it’s not able to do its job.

This will mean another physio plan, maybe spinal injections and another condition I’m going to have to deal with for life.

I’m due to return to work soon and I just feel like curling up in a ball. Being on maternity leave has been the most carefree time of my life. If I flare up, I can recover at my own pace without anyone breathing down my neck. I’m not letting anyone down or facing judgement from colleagues when I return. Trying to juggle all of my health problems along with my job feels exhausting and impossible. I feel like my body is failing me and it’s just going to get worse.

I don’t really know what I’m asking but has anyone else gone through a similar situation?

I hear you. Im living with a slowly deteriorating chronic condition that's used up most of the past two decades of my life, it sucks. There's no other word for it. It's a battle.

Have you been able to talk to a counsellor about what you're dealing with? There are no magic answers but I find some of the relaxation strategies I've learned make that little incremental difference to feeling a bit better and more able to cope, and to get through the really rough patches. for you.

Thanks for replying. You’re right it’s just an awful feeling.

I think relaxation strategies would help. I found hypnobirthing amazing so might try something similar.

I had some counselling sessions a few years but they focussed on anxiety I was having. I probably should speak to someone. I feel a bit like the frog in the pot. I didn’t realise I was in hot water until it was boiling.

Thank you for replying, it can feel very isolating.

Hi Flamingo You sounds like you are having an awful time. I also have a chronic health condition and it's very wearing and depressing and isolating. There is constantly something wrong with me.

Have you been checked for secondary/central hypothyroidism? The symptoms and very like ME but is often missed by GPs. I can give you more info on this if you would like and what tests you need. Feel free to PM me.

Life feels very hard when you are unwell. 💐