The doctor thinks i have CFS, what do i do?
Posted , 6 users are following.
I am 14 years old and have been suffering from an ongoing fatigue for several months now, it seemed to start after i recovered from the flu which caused me to loose weight. My whole life i have been an insomniac and since becoming a teenager it has become worse. My sleep is sometimes okay but even after sleeping 10 hours i am incredibly tired. I have had loads of blood tests and have a vitamin D defficency which i take tablets for. I have been off school 3 weeks with work being sent home and have quit my dancing. None of my friends or family really understand how hard living with this is. I get frequent headaches, i sometimes leave a room because i think it's too loud, i get muscle and joint pains and my fatigue does not go away with rest. I would really appreciate any help anyone can give or to just be able to talk to someone who understands what i am going through.
1 like, 9 replies
jackie00198 Meg515
Posted
Meg--I'm so sorry you're suffering with this illness, and at such a young age. It's actually good that your doctor has given you a diagnosis, because many with ME/CFS do not get diagnosed for years. Because you are so young, you probably have a better chance of recovery than older people with the illness. The most important things you can do is get plenty of rest, pace yourself, and above all, don't try to push through the fatigue. This can worsen symptoms and perhaps lessen chances for a recovery. De-stress in whatever way you can, as stress can exacerbate symptoms. Avoid sugar, caffeine (coffee or chocolates=). For some people, low doses of tricyclic antidepressants, like Doxepin (40 mg) can help. When I first got ill, Doxepin got me from feeling deathly ill to almost normal. If you do take one of these drugs, start very low and increase very slowly to the target dosage. I actually would open a capsule, empty most of the contents, and gradually ramp up that way. You've come to a good place here, and I'm sure you'll get lots of support.
KPD Meg515
Posted
Meg, I'm so very sorry to hear that you are stuggling with CFS at such a young age. The good news at that the younger you are, the better chance for recovery. I've suffered with CFS for 25 years, and my own daughter was also diagnosed with post viral fatigue at age 15. It was devastating watching her go through this at such a young age. The doctors and her friends did not understand what she was going through either, so we ended up getting her to a therapist to help her manage her symtpoms. She is now 22 years old and is doing much better. She is finishing up her last year in college.
Take care of yourself and try to find someone who you can talk to-maybe a school conselor would be a good start. Try to pace yourself and maybe start doing some meditation, yoga, and light exercise, but do not let others make you feel bad about what you are going through. Take care and hope things get better soon. KPD
Cabernet61 Meg515
Posted
Hi Meg515
I agree with clivealive do get your folate and B12 levels checked if you haven't already, a lot of doctors dont test for it, they look at your FBC and if this is ok they dont bother to test, they didnt test me for B12 deficiency and I had it, I was given antidepressants, of course they didnt help, I eventually lost my job.
Some people cant absorb B12 through the stomach so need B12 injections or sublingual. I hope your health improves soon.
Jyst Meg515
Posted
Hi Meg515, I have a small understanding as to what you are going through ! My daughter was diagnosed with Post Viral Chronic Fatigue last year when she was 14 , unfortunately help is very limited where we are and it has taken a year for her to get the help require ! Please make sure you rest and keep a diary of an y activities you do so this can help,you manage your energy levels . My daughter has gone from being a very active girl to having to use a wheel chair to leave the house , she is now 15 and coming to terms with this blip in life but continue to tell your friends and parents how you are feeling as it's really hard to come to terms with ! As parents it's hard to understand how our kids can go from active to suffering so much in a small space of time , we have had to made life changes at the present time with me giving up work to care for my daughter full time . Good Luck and don't let people fob you off with negative thoughts as your illness is very real X
KPD Jyst
Posted
Jyst,
I'm so sorry to hear about your daughter. I posted a comment earlier letting Meg know that my daughter was also diagnosed with post viral syndrome after a flu in 8th grade. She went from being an energetic teen to one that required lots and lots of rest. She has improved, though, and managed to make it though high school and now is getting ready to graduate from college. Like you mentioned, there is no standard way to treat this illness. My daughter ended up going to a therapist to help her manange these very "real" symptoms.
As a college student, she is able to pace herself and then rest/nap in between classes when needed. The hard part about it is that I, too, have CFS but wasn't diagnosed until I was in my 30s. It saddens me when I hear that younger kids are robbed of so many joys in life due to this mystereious illness.
Like Jyst said, don't let people make you feel bad about this Meg. Try to pace yourself and find someone you can talk to about it. Hope you begin to start feeling better in time and best of luck to your daughter, Jyst. KPD
Jyst KPD
Posted
Thankyou so much , unfortunately we are struggling at the moment as my daughter was never ill ! She has never had an illness to give us any cause to worry. She had her first blood test at the age of 14 and I think this is why I struggle with this awful illness. My daughter has had endless months in bed and has had to be carried to the bathroom and showered by myself but as a 14 year old you can imagine this was her worst nightmare but it was better than a stranger doing it. She has also so bouts of being fed like an infant as even lifting plastic cutlery has been too much .After a year of battling I think we have found the right paediatrician as this is our third one but fingers crossed things will improve , I am very lucky that my daughter has not given up hope of recovery even though most friends of stopped getting in contact and she has not attended school in over a year . My daughter has also just managed to brush her hair , which is the first time in 11 months so we are thankful for that the next step is to have more the a half a cup of drink as full cups are too heavy to lift. Sites like this are so very welcomed and being so young makes teenagers feel alone as it's so hard to describe the pains and symptoms to make others understand. Many Thanks again and I wish you all the best x
KPD Jyst
Posted
Jyst,
I can't tell you how saddened I feel about the situation you both are in. I know how hard it is on the mom, as well-feeling out of control. I know I felt that way, especially since I also have CFS. At the time I got pregnant, there was not much known about CFS. Now they seem to think there is a genetic link.
I just hope that this new pediatrician can help your daughter and get her to where she is feeling much better. There is some new research about ampligen being helpful for the small percentage of people with CFS who are bedridden and very sick. Unfortunately, the drug has not been approved. If the pediatrician is not helpuful, I would recommend looking for an infectious disease doctor.
Stay strong and keep up the hope. I understand how you daughter must feel about friends giving up on her. My duaghter lost many of her close friends during the years when she was very sick. She couldn't do much of anything except drag herself to school and then back home again to get right back in bed again.
Has your daughter tried anything in terms of vitamins or prescription medications, yet? Is your daughter sleeping well? Even though both my daughter and I get extremely fatigued, we have a hard time sleeping. I have found that a very low dose tricyclic antidepressant called Doxepin has helped me. With my daughter, it actually made her more tired, but her doctor did prescribe her Effexor which has helped some.
Please keep me posted on any progress. Wishing your daughter the best! KPD
Jyst KPD
Posted
Thankyou for your advice , she already takes multi vitamins , magnesium and extra vita,in D . We also have had various mild antidepressants but these tend to make her even more drowsy . And again we don't have a infectious disease doctor close to us . I fact we have pretty much had to go the first year by looking up help and advice for this illness as when she was diagnosed it was just this is what you have and see you in a month ! As a family we also looked to take my daughter away to get more specialist help but at the time we were advised that if we took this action that we would lose the very limited help we were getting .so unfortunately we spa net the last year playing the game but as of January this year we have taken control of many aspects of our daughter life and hopefully she can make progress. There just seems to be little help and guidance for teenagers where the older suffers have had a little life experience to aid them in making there problems and ailments get noticed. It is just a shame in this life that there is not more that can be done for all of you suffering in silence and many behind closed doors x All I get when I try to explain my daughters condition is [ how nice would that be to stay in bed and do nothing ] ! A very close family friend realised how bad things were when they popped in and saw my having to feed my daughter and assist her drinking from a beaker with a straw ! Said friend left in tears and didn't come back for over a month as they didn't know what to say ! Life is very cruel at times but sites like this have helped my whole family. Again Thankyou for taking the time to help and advise us and apologese for the rant x
KPD Jyst
Posted
It is so frustrating, Jyst. There are limited resources and so little known about this disease. I just hope that they can find a cure or at least a treatment in both of our daughter's lifetime. I'm wishing you the best of luck. Please keep me posted. KPD