ME and DLA?

Mojisola

cherub1965 wrote: »

did the doctors give any reason or theory why both your sons had ME? immune system problems or anything?not being nosey,just curious.is there any rheumatoid in yr family/i wouldnt be surprised if they didnt find a link somewere down the line in years to come tbh.

I have ME too and, as it's a mitochondrial dysfunction, it's not unusual for mothers and children to have it - we all inherit our mitochondria from our mothers. There does seem to be a link between 1st degree family members having auto-immune diseases and ME, too.

Melatonin is produced in the brain when it is dark and is switched off by light. We take it in the evening to help us get sleepy and, in the winter, we use a light box in the morning to switch it off and kick-start the day. It's the blue end of the spectrum that inhibits melatonin and my sons have recently bought blue-light-blocking glasses which they wear in the evening. They have found they don't need to take the melatonin when they wear them but there is the disadvantage that the glasses make them look like extras from Star Trek!

cherub1965

i will get some melatonin to try while he is on holiday before uni.is it related to serotonin re post 29?mum could never sleep yet snores the clock round now she is on meds.

Mojisola

As I understand it, melatonin is derived from serotonin which is derived from tryptophan. For everything to work right, you have to have tryptophan in your system and the enzymes which do the converting. Even if that all works right, if you don't reduce your exposure to the blue end of the light spectrum, melatonin just won't be made.

TOBRUK

Hi cherub1965, it is worth him applying for DLA. I have M.E. and receive DLA.

I hope things work out for him although it does sound as though he is going to struggle. The important thing is not to push himself otherwise he may never recover.

Another option would be to do OU and if he receives DLA he would I think be able to get help with funding - not too sure about that sorry. I'm sure there is a section on the OU website regarding help for disabled people and those who are eligible for financial help or other.

I know it's hard because he wants to go to uni, and ofcourse if he feels he is alright if he paces himself then fine. If he finds it's too much and he relapses then he may have to rethink. I have had M.E. for over 13 years and I became so bad that I had to leave work and now I'm lucky to have one mild day a week to be able to get dressed for a few hours! It's a horrible illness and although I take a lot of medication, I'm never without pain and always exhausted.

cherub1965

tobruk,he didnt go last year but is determined to go this year,just wants to be independant.only 5 miles down the road from me so he feels secure knowing hes got home to crash if needed.i think after talking to people on here he is not at such a high level and manages to function,he never spends a day without being able to get dressed or out of bed.he just tends to spend a lot of time relaxing in his room,he seems to have worked out his limits.did you get worse over the years/he had a really rough time from november last yr until maybe last month.he was so stressed with college.do you find stress makes it worse?

cherub1965

Mojisola wrote: »

It sounds as if he's managing it as best he can. Pacing is the only management method that seems to help. The people in our group who have been helped by CBT are the ones who were overdoing it all the time. CBT helped them to see that they had to work within their capabilities.

All the other arrangements are very sensible. He has a back-up plan and the uni are on his side. Good luck to him!

Sleep disruption is one of the defining symptoms of ME, especially with younger people. At one point my eldest's sleep cycle was almost 12 hours out - I had a 12 year old awake until 6 - 7am and then sleeping until 5 - 6pm and, as you say, waking exhausted. Coping with my own ME and a younger child was very difficult - thank goodness the memories fade! We buy Melatonin from the USA to help with getting to sleep.

Mojisola wrote: »

As I understand it, melatonin is derived from serotonin which is derived from tryptophan. For everything to work right, you have to have tryptophan in your system and the enzymes which do the converting. Even if that all works right, if you don't reduce your exposure to the blue end of the light spectrum, melatonin just won't be made.

wow you certainly know your stuff.nobody medical has mentioned any of this to us.my son is researching as we speak.thank you so much for all your help

Indie_Kid

Medical advice isn't allowed on here.

Mojisola

sh1305 wrote: »

Medical advice isn't allowed on here.

If there's any problem, I'll delete my posts. I didn't think I was giving medical advice - just explaining what we, and other members of our support group, do.

covlass

Melatonin is produced by the Pineal gland, I would very careful if you intend to get hold of this as 'True melatonin is controlled in the UK.. My daughter has been taking it for a number of years and even my GP can not prescribe it we have to get it via consultant at the hospital

TOBRUK

cherub1965 wrote: »

tobruk,he didnt go last year but is determined to go this year,just wants to be independant.only 5 miles down the road from me so he feels secure knowing hes got home to crash if needed.i think after talking to people on here he is not at such a high level and manages to function,he never spends a day without being able to get dressed or out of bed.he just tends to spend a lot of time relaxing in his room,he seems to have worked out his limits.did you get worse over the years/he had a really rough time from november last yr until maybe last month.he was so stressed with college.do you find stress makes it worse?

I have got worse over the years despite trying different things, a few years ago I tried 'pacing' however it didn't work for me, infact I got worse. I used to be on the go non stop, working long hours, socialising etc and now I'm virtually housebound! The hot weather we're having is making it worse for me with more muscle pain and exhaustion etc etc!

Mojisola wrote: »

If there's any problem, I'll delete my posts. I didn't think I was giving medical advice - just explaining what we, and other members of our support group, do.

Well I have never been to any support group - I wouldn't be able to function - listening, speaking etc would really tire me out, that's if I was able to get there in the first place! If I'm in a room with people chatting after a short space of time I'm shattered!

cherub1965 wrote: »

i will get some melatonin to try while he is on holiday before uni.is it related to serotonin re post 29?mum could never sleep yet snores the clock round now she is on meds.

If you want to try anything at all you should discuss it with your GP! Even some 'natural' medication such as vitamins, plants etc etc seemingly harmless things can be very dangerous! Do not try anything without speaking to your GP ESPECIALLY if he is on some medication already. Does he see the GP on a regular basis?

I see my GP (at her request) every 6-8 weeks, and she knows my difficulties, pain and other symptoms. I am on a number of different painkillers that work in different ways just to ease the pain,spasms etc. If your son is to apply for DLA it would help if his GP was up to date with his condition.