Help!
Posted , 10 users are following.
My daughter is 14 years old and has been suffering the Post Viral Chronic Fatigue sine the 2 of February 2016 . We have not been given much information re this problem and have mixed options on the net ! Looking for sites for advice and how people have been helped. , we live in Guernsey in the Channel Islands and I feel that every step of our Journey so far has taken so much time to get help , re physio / education and Drs appointments ! Any advice very much appreciated x
0 likes, 18 replies
Jk1952 Jyst
Posted
Hi, I'm just on my way out but I would like to reassure you and your daughter that you have found an informative,useful, and compassionate site here. I swish you well.
artistmike Jyst
Posted
Hi,
If you have a look at the website for the ME Association, you'll get a lot of help and advice that will help your daughter cope with her condition. The one good point is that she is young and the possibility of a full recovery for people of her age is far higher than us old fogies.
Having said that it is very, very important that she learns to live within her capabilities at the moment, she needs a great deal of rest and should never push herself to do anything, otherwise she will end up in the boom and bust cycle that can do us all so much damage. That may not seem a lot of fun now when no doubt she wants to do everything her friends do but it really will give her a far better prognosis for her future.
You'll get a lot of advice here and on the Internet there is a great deal of discussion, some of which is more sensible than others There are claims of all sorts of 'cures' but the reaity is that no-one as yet can cure the condition and your daughter's best bet is to give her body a chance to recover by itself. It may well take a good deal of time but she has a good chance of getting there.
Like many on here I am a long term sufferer, sixteen years now so I know a lot about how your daughter is feeling and it's pretty dreadful, often made worse by the fact that she won't look ill and that other's just won't understand just how ill she is and how awful she feels.
Wish her all the best from a fellow sufferer and again, tell her to rest, you can't work or exercise you're way out of this, it just takes patience and taking great care of herself till she's back on form and I hope that's as soon as possible and just shout if she needs help with any particular aspect, there are plenty here with experience of what it means to feel like her.
best wishes to you both..
Michael
Jyst artistmike
Posted
Thankyou for the information you have provided and I have looked in to the ME Association which helped in some areas unfortunately I live in Guernsey and a lot of what is offered in the Uk just isn't available to us x
Guest Jyst
Posted
Hi Jyst
Michael has probably just given some of the best advice you will get, as a fellow Islander I am wandering if you have found an understanding GP yet? If not let me know and I can recommend a few that i've had recent dealings with, as already mentioned there is no cure a Dr can give yet but having a Dr who is understanding rather than dismissive can make a real difference to how you feel about yourself with this illness.
Are education helping her now? is she getting extra time for her exams or anything like that? I haven't had to deal with the school system during this so i've no idea how good/bad they are with stuff like this over here.
I feel so so bad for her going through this at her time of life when things should be so exciting but as already mentioned at her age she has a much better chance of recovery, so don't lose hope and there is so much more research being done now, it is recognised as a very real illness (even if the mainstream media doesn't care to make a big song and dance of it as they have of putting us down) and help will be on its way.
Unfortunately, it is a case of waiting and dealing with it the best you can, but she is very lucky to have you, most people don't have someone as proactive as you on their side. Patience and understanding are the two best gifts you can probably give her - it sounds as though she already has that from you
Jyst Guest
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Hi Kirsty, Thankyou for the positive side and it's great to hear for a fellow islander! Education took a long time to acknowledge us but the allowance is 2 sessions a week at home which isn't brilliant but better than nothing. Unfortunately my daughter has to use a wheel to to get around outside of the house but doesn't have the strength to push herself so school is out of the equation at the moment and as this has been going on since February friends have already lost interest in the (sick kid) ! On the plus side we have been given hydro physiotherapy twice a week for 20 minuet sessions which we have found helps apart from that the diagnoses was given with not a lot of information . My daughter is on pain medication and has been advised to only sleep 12 hours at a time but in the begining she was sleep 18/20 hours at a time with no disturbances ! Is this normal ? Our GP is good but has taken us to the level he understands and we are now under a new locus Peadiatricion but again she has limited knowledge of PVCFS , feeling confused and un informed most of the time after appointments as everything is always ill need to find out and let you know next time !! I have come to the conclusion that Guernsey just doesn't have the right specialist on island to help . I was also surprised that there is no help group / therapy sessions available ? Unless you might know of some ? Thank you once again for your time x
Guest Jyst
Posted
Oh my, she must feel terrible, must be very difficult for you too. I don't if you daughter can use a computer much but if she can still focus on one, there is a good free resource online called Kahn Academy that might be helpful for catching up with her studies.
Whilst there are not many resources in place to help, to be honest I don't think being in the mainland would be much better, from everything I have heard/researched online, I think we have it pretty good over here, particularly with physio, they seem to take a common sense approach over here whereas in the mainland it sounds like they push the graded exercise too hard and make a lot of people worse. The PACE trials have been ripped apart in recent months and I wouldn't be surprised to see them come off the NICE guidelines in the future (but how long that takes is anyones guess).
Yes that can be a normal (for want of a better word) amount of time for us to sleep, i've never been completely bed or house bound (no more than a few days at a time), but when I was still working I could easily sleep at the weekends all night and all day only getting up for an hour to eat drink and then go back to sleep. At the end of the day if her body needs the rest it needs the rest but probably a good idea to try and get her to wake at more regular periods even if it's just to re-hydrate.
I still find waking up in the mornings terrible, it feels as if you have been drugged and it's really hard to wake yourself up. I can set 4 or 5 alarms and it will still take my partner to clatter around in the kitchen because he knows the noise will help to slowly start waking me up more. After particularly long sleeps I can't speak properly and struggle to use my left side, so my other half knows now just to get me water, can sometimes take a good couple of pints before I am with it again.
I guess it's hard for kids at that age to keep in touch, as well as like you say they are easily bored, I think given their lack of life experience they really don't know how to react or what to do/say, is this something the school could help with by encouraging her class to send her cards or do something in their art class for her? it might just help bridge the gap between them.
With regards to being informed unfortunately it's just all of the latest reasearch coming out to catch up on and keep an eye on. The likes of Robert Naviaux, Ron Davis, Maureen Hanson, Griffiths University in Australia, the NIH in USA are starting their own studies too, i'm sure i've missed plenty off that list, but if you google a guy called cort johnson, he does a really good job of putting the latest research into an easy to understand format. One of the latest (and I believe almost proven theories) is to do with metabolomics, I can't explain it but its worth reading about. Ron Davis' own son (Whitney Dafoe) whilst still in a bad way has had some improvements so they are on the right track somehow.
I don't know if you have ever been told to consider Lyme Disease but it may be worth keeping an eye on the latest on that too.
The only group I am aware of is the local Fibromyalgia Support Group, if you google "fibromyalgia group guernsey" it's the first result that comes up. Looks like their next meet is at 10am on 24th Sept at St Martins Community Centre, but I don't know if you need to book in so it might be worth contacting them first. I hope that's of some help and you're very welcome, it's nice to feel useful for once cause I'm not use for much at the moment x
Jyst Guest
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Once again Thankyou for taking the time to offer advice , I have had her checked for Lyme disease already as this was one of my first thoughts . Unfortunately re school and friends school do there best but even our tutor struggles with them replying to his questions . On the plus we are very lucky to have a supportive family which visit on a regular basis and I also have a son which entertains with news from school . I have made contact with the fibromyalgia group and am just waiting for a reply. I have read an article on line that came from the Daily Mail advising that there has been a discovery re blood test in the USA and I have also been in contact with a clinic in the UK, unfortunately my daughter is having a bad day today where she can not even stand or lift her legs or arms un aided ,this for us is hard going as I needed to call my husband home to assist in getting her to the bathroom ! Lucky he could pop home , this doesn't happen too often but it seems just as we hit a good period something else stops working . So again Thankyou for the positive and please know that you have been extremely helpful to a desperate parent in her time of need X And I wish you luck in your recovery x
Beverley_01 Jyst
Posted
Hi jyst,
In the UK here but, this bit maybe useful. Ester ranstons ( tv presenter in 80/90's here) daughter was bed bound with this at 17. She was able to make full recovery from rest and taking things extremely slowly. Maybe worth googling to give some hope. Sadly, no quick fix here. There is a girl at my daughters school in her early teens and she is able to do less days. It may be that the school could be more understanding if given more information? I'm a member of the ME association and they have leaflets for friends/family to help understanding. I think it's a worldwide organization.
It can be quite distressing when your body is so weak, like your daughter's yesterday. I've found that for me I need others to just be there with reassuring . I was really active before this condition and on bad days when I can't move or my body is in bad pain levels, someone just giving me a cuddle or acknowledging how rubbish i feel, means alot. It sounds that you're very hands on and supportive which is a massive boost for her. There's a discussion on here with a girl whose parents weren't on board and it was a real struggle to get support. Talking of support, you need support too. It cannot be easy watching your daughter struggle so badly. Make sure you get some time out and don't neglect your needs. As parents with children with a condition that is demanding, it can become all consuming but, we need to refresh our own batteries to function well.
Best wishes
Beverley
Jyst Beverley_01
Posted
Beverley_01 Jyst
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Hi jyst,
It is not a card any of us would have picked, that is for sure! I know exactly what you mean that there is a down to things. I am yet to find the balance needed to be able to start doing things without payback.
I have been with the cfs/me service here and that has been helpful. My specialist nurse has been understanding and supportive but, its a limited service. Mindfulness is a key aspect and although it may seem hard to grasp, really simple pleasurable things can help to rest our brain as the tendency is to over think things we can't change at present with this condition. I'm not great in this department but, just allowing myself to say watch the rain and almost accept it in a childlike wonder can help.
I too have a wheelchair for bad days and it's also one I can't push myself. I'm embarrassed to go out in it because of people's reactions which is ridiculous I know. Also, I feel unsettled that my children are having to care for me in such a way.
This condition is so challenging in different ways!
Beverley
jackie00198 Jyst
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Google the "solve me/cfs initiative" website. Also check out the website for the Centers for Disease Conctrol and Prevention, and then search on ME/CFS. The Internet is an amazing resource for information on this illness, so you could just Google ME/CFS and see what you find. There have been many conversations here on whether Post Viral Chronic Fatigue is the same as ME/CFS, etc. I come down on the side of "they are the same." My illness was called Post Viral Fatigue by some doctors, and ME/CFS by others. In general, I find that GP's are often not that knowledgeable about this illness. The appropriate specialists are infectious disease doctors or rheumatologists. There is no treatment per se for this illness. I would advise your daughter to get plenty of rest and not push through the fatigue. Pacing is key. Also, she should avoid caffeine and sugar, and get a good night's sleep, if that's possible. Stress can hugely trigger symptoms, so it's imortant that she remain calm in whatever way she can--listening to music, for instance. I'm sure people on this forum who live in the UK can help you with more specific recommendations about navigating your health system.
Jyst jackie00198
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phillis55984 Jyst
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Everyone who has written has given good advice. I can't add anything except to say you have found a good place to come for information and support. This forum is excellent.
Jyst phillis55984
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jillian27195 Jyst
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Two months ago I could not have written this. I too could sleep around the clock and still be tired . It started with cfs 15 years ago after sepsis. I had given up hope but a new doc put me on a gluten free diet and I feel better than I have for years. Gluten was not affecting my gut but my brain and causing gluten ataxia.
Sheffield research is known across the world. Please make contact with them. They may just have the answer.
Jyst jillian27195
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Thankyou Jillian ,I will definitely look into this . My daughter doesn't eat gluten and hasn't done for many years so we can rule that out ,but I have read many stories on how gluten hinders recovery ! We have a peadiatric appointment this month and will also ask as well as contact Shefield Hospital myself . Again this site is and has already helped us so much , so Thankyou for taking the time in your day to offer us help and advice. We wish you a safe recovery x