Bowel problems with FND

[sr262]

Hi there,

I am new to the group and have never used a forum before so a new and scary thing for me 😊.

A little background is that I have hashimotos disease and had to have a full thyroidectomy last April. Since having the operation I have never been quite right and my levels were always low.

In April this year I saw my doctor and have not been at work since. I initially was signed off as being severely hypothyroid and the doctor told me my body was shutting down she upped my thyroxine quite dramatically and I started to feel a little better then after about three weeks I woke up one Sunday and could not stop my body from jerking and was having the non epileptic fits so I was admitted to hospital as the doctor thought my calcium levels may have dropped.

I saw the endocrinologist who said I needed more thyroxine but that the symptoms I was displaying were neurological. I had an emergency CT scan but it was all clear. I was discharged and had to wait to see a neurologist at the end of June. My symptoms got progressively worse and it was thought I may have early onset Parkinson’s disease as I could not stop the shaking and tremors and could not walk unaided. An MRI scan was ordered but the results were fine and so the neurologist did not want to see me for six months! In the meantime I have been struggling with speech and swallowing issues, mobility issues, ticking as though I have Tourette’s but without the swearing, sensory problems, cognitive issues & terrible sleeping issues. My body is so sore sometimes to touch and my joints ache constantly. My newest symptom is loose bowels and not being able to control them, which is so degrading!

I paid to go private and have now been diagnosed with FND.

I was so scared as I had no idea what was happening to my body as I just woke up one day and I was not working properly. I find it has made me quite low as I am only 32 and cannot do things that I used to and have lost my independence. My husband and children are brilliant and look after me so well but everything in my life has been turned upside down. Even simple things that I loved to do such as walking the dog I can no longer do!

Nobody understands what is going on and keep saying to me you look well, keep positive but it is so hard when you don’t know from day to day when you wake up what your body has in store for you,it can be very lonely!

We have just bought a Goldador puppy with the aim that he will be able to be an assistance dog to me and help me with tasks I find hard and a walking support for if I am having a better day and can walk to the end of the road.

I am sorry for the long post - I just wanted to know that I am not alone in the symptoms and feelings that I am having.

Thanks all

Sam

[DNE92 Moderator FND Hope UK]

Hi Sam

Nice to meet you (I know weird because none of us want this FND). Totally sympathise - I've had really embarrassing symptoms too in public during many of my relentless seizures. Mine are daily and usually 2 - have had my quota for today (hopefully). I'm a distance runner and just keep dragging myself to train - I like to feel fatigued for a "proper" reason. I have a co-morbid disability which also causes fatigue. Double whammy or what. Dread bedtime - so knackered that I can't sleep. GP has me on sleeping tabs. And a bucket load of others. Weird - I have hypothyroidism (just recently diagnosed and on meds) but everyone always thinks I have an eating disorder as I am thin. Paramedics who were called last week when I was found lying seized outside (in the pissing rain) thought I was getting the word wrong and that I meant hyper. Hey ho. It does suck - I was medically retired and try to run my own business but that is not really happening. I'm a lawyer and hubbie is trying to get me to accept that working again in a sustained way is probably not going to be achievable. He's not being pessimistic just realistic. I too have pets but 1 of my dogs can pull a full grown big bloke off his feet from a standing start. Even the vet can't believe his strength.

Sorry for the short reply - not long back on my feet from seizure and pretty knackered. Saving myself for the stupidity of the Apprentices'. Hubbie and kids telling me to get off the computer.

Hello again and you're not on your own - we all know how it feels and how isolating it can be.

Cheers

Lou

[sr262]

Hi Lou

Thank you for your reply, it is nice to know others stories and how similar they are to mine.

I have been off work since April and it’s not looking as though I will be returning any time soon - retirement on medical grounds has been mentioned to me also. I work in Finance and there is no way I could be doing my job at the moment, I can’t even add to simple figures together or know what number is next in a sequence on my really bad days!

It is so worrying when you have a mortgage to pay,and babies to feed. My critical illness policy will not cover me either.

I’m sorry to hear that you are suffering with the seizures, they are awful and I am lucky that I do not have them too often, they must completely wipe you out!

How interesting that you are also hypothyroid! I do wonder how much of it is connected.

Thanks again for responding to me.

Sam