Advice please on symptoms..

New diagnosis and before diagnosis
1

Hello,

History: I’m a 51 yr old female. Diagnosed Glandular Fever at 16, ME at 24 - confirmed Epstein Barr Virus. Chronic constipation from age 22 ongoing. Current complaints are Chronic Spontaneous Idiopathic Urticaria with Angioedema & Anaphylaxis diagnosed 2017 and ongoing. Cervical Spondylosis diagnosed in 2018 with debilitating neck pain and spasms (take Baclofen and awaiting cervical steroid injections). Rheumatoid Arthritis in right forefinger and hand from 2017

In short my immune system has played up my entire life. In the last 2-3 months I have been suffering extreme fatigue just like my ME years ago. I’ve found that sometimes I’m not making it to the loo in time and leak if I cough or sneeze and however desperate I am when I get there it’s not a full flow (sorry if tmi!) Then I had a weird ache in my right calf which I thought I must have pulled a muscle but no recall of doing that. However that never got better. Then 4 weeks ago I had a particularly bad fatigue day, felt very unwell and over the course of the day my right side face, arm, buttock and leg all went numb and tingling. That sensation you have when you have a dead arm but all over my right side? I was concerned was a TiA but my speech and cognitive function were all ok. My face numbness was gone the next day but the arm leg and buttock have continued with brief interludes of respite. My right shoulder /arm feels heavy and although I can put my arm above my head it feels weak and weird, aching in the shoulder joint. My right hand is constantly tingling in the palm and wrist and finger tips. I also can’t grip properly and keep knocking things over like a clumsy oaf! I’ve also had even worse constipation than normal followed by colon spasms that last days which even the Baclofen have not helped and I’ve not been able to sit down. I’m at my wits end. Dr appointment finally this Monday (I’ve had to wait over 2 weeks for).

Any advice would be so very welcome, I can’t lie, I’m feeling very worried and my husband (least empathetic person in Britain) is concerned although I’ve not discussed anything of this with him. He never normally bothers but he’s been pressing me to see a dr as he says I do not look myself at all.

Thank you in advance

2

hello TiddlyBoo

I’m sorry that your CNS is being such a pig with you.

Just thought I’d share what I learned from the bladder and bowel nurses.

Main point is that there is limited space in the abdominal cavity, so that if you are not getting your poo out, it interferes with getting your pee out and vice versa.

I was given movicol which serves as a mild laxative (you can take more if needed).

Then had to record everything I drank and how much (measure how much your usual mug/cup holds).

then measure how much I was peeing (have a cheap plastic jug).

this gives an overview of what is going on.

Then I was taught how to self catheterise, which is tricky to get the hang of but a godsend when I really need a pee.

I have a few self taught hacks to share - lay your arms across your lap (when sat on loo) lean forward so that your lower belly rests on your forearms, if nothing is happening press with your hands on the lower belly. I now press with my fists.

Hope something helps.

Damn this Covid because the bowel and bladder clinic would have been ideal for you.

1 Like