Update from Limbo Land

Hi all,

A long post, but trying to keep a record on here of what has been going on. I know reading is hard for some of you. If so, just scroll on by and have a good Christmas.

For newbies on here - the best advice anyone gave me on the forum was ‘always have something to look forward to, no matter how small’. It’s kept me going through some tough times.

Prior to 2013: Developed, what has proved to be permanent pins and needles in both feet, and tinnitus. Developed urinary urge incontinence & diagnosed with unstable bladder. This disappeared after a year.

2013 - terrible fatigue for several weeks. Diagnosed as post-viral fatigue

2014 - terrible fatigue for several weeks. Diagnosed as post-viral fatigue.

2015 - August - strange sensations in right leg and foot (blood turning to ice, walking on glass, something tied around big toe), terrible fatigue, unable to wear normal shoes as right shoe too heavy to lift off ground. Referred to neurologist. Right quad and hip flexors very weak, reflex at right knee almost non-existent. Apparently a strange mix of central and peripheral nervous system symptoms. MRI and peripheral motor testing all clear.

2016 - rapid recovery, but terrible neuropathic pain in right leg and reduced sensation in right foot. Prescribed amitriptyline by neurologist. Weakness in right leg remained. Not able to access physio for it, as neurologist didn’t give a diagnosis, so normal physios said problems with leg were neurological and therefore they couldn’t treat, and neurophysios said no neurological diagnosis, so they couldn’t treat. Stuck in limbo

2017 - Continued weakness and pain in leg. Collapsed on walk when got too hot (wrapped up against cold too well). Was like someone pulling plug out and I had no energy to keep my legs under me - diagnosed as ‘must have been running a virus. Some viruses do strange things.’. Also diagnosed with Reynolds’ Syndrome.

2018 – Pain stopped (yeah!!!). Collapsed on a walk again. Suggested by GP that I’m diabetic (tests said not). Same GP also said 2015 MRI was clear so no neurological involvement. I had ‘obviously suffered a trapped nerve’, therefore I should consider cognitive behavioural therapy. Did at least refer me to physios though, as I was having problems walking due to right quad muscle feeling too tight, and GP found that right hip flexor was extremely weak. Physio was great, and strengthening exercise help, but leg remains weak.

2019 – November: Collapsed on a walk again. Suggested by GP (different one) that I have low blood pressure for my age, but couldn’t offer suggestion why it’s only when the weather isn’t as cold as I think, and I have fleece, coat, hat, and gloves on. December: Terrible pain in left ribs. Lasted 6 hours and felt like a sharp knife being run back and forth between my ribs. Couldn’t breathe in properly. Went as suddenly as it came on. Following week woke with an ache in left hamstring. This developed into absolute agony within a few hours at work, and couldn’t walk or drive home. Sent to a&e by work as they were worried it was a clot. Quick exam by doctor showed no clot, but diagnosed as trapped nerve (only physical exam done, no scans). Lasted all day. Fell asleep at some point in night, and woke up with hamstring pain gone. However, now have ache in left hip flexors, and my left calf muscle is tight and feels like I’ve strained it.

I’m enjoying my life, especially as I’ve had a hint of what it’s like to live with a body not functioning and in pain. BUT there is something not right in my body. I don’t mind not knowing what it is, but I’m fed up with the gps at our local practice not looking at me as a whole. I’m starting to feel fobbed off by them. It would be fine for them to say that something is wrong, but we don’t know what. At the moment they are making me feel like a hypochondriac!

Anyway, hoping everyone has a good Christmas. You’ve all been so supportive over the last 4 years.


Have you said to the gps that you don’t feel like they are looking at you as a whole and that you feel like your being fobbed off?