Could I have CFS?? Please help :(
Posted , 4 users are following.
Hi everyone
for the last 10 months i have been going insane with whatever problem i have!
it started with a flu like illness but with rashes behind my ears and bad sensitivity to cold as well as dizziness and horrible anxiety and depression. i also had a rash at the time on my penis and anus which i thought was HIV so id given myself a lot of trauma too!
the problem is because of 6 months of being convinced i had HIV or herpes ive given myself horrible OCD type health anxiety and suicidal depression, plus a complete disconnect from reality. so it could be that rather than CFS.
my symptoms for the last 10 months have been:
constant sore/dry feeling throat
depersonilisation
balance issues/dizziness
rash behind ears/over face (see pics)
constipation
sore joints
stinging lips/inner nose
sensitivity to cold
cold sweat if I over exert
depression/anxiety
feeling feverish most of the time
lower back/buttock/back of thigh pain (often pulsating or shooting)
i dont have the classic fatigue though. in fact my anxiety means i struggle to be still.
i feel it could have been a nervous breakdown i had/am having. the doctors arent that helpful and think im just struggling badly with depression and health anxiety!
any help is greatly welcomed as im so close to calling it quits. whatever i have shows no sign of leaving! 😦
also i had 7 months taking ativan/zopiclone/codeine and kinda went cold turkey which was the worst month of my life. so maybe ive got a bit of post acute withdrawal syndrome.
many thanks
0 likes, 11 replies
AndyC77 JP1986
Posted
Hi, Sorry to hear your struggles. I cant tell you if you have it or not but you must get a doctor that benefits you. Keep changing if need be, make them do their job properly. You cant go undiagnosed. Some of them symptoms relate to ME/CFS in my experience but not all. Dont ever give up on yourself, we are supposed to live in a civil society, i know people get swept under the carpet but dont let that be you, you must get the help you need. Keep us updated here if it helps.
JP1986 AndyC77
Posted
hi Andy thanks
would you say i could still have chronic fatigue if i can walk a lot in a day and not really need to rest?
i stay awake all day and sleep about 8 hours a day.
its so tough because ive suffered traumas in the last 10 months, financial and health scares, which triggered severe OCD type symptoms. so it could be that causing me such distress or CFS.
either way its my suicidal thoughts which are the most troubling for me
AndyC77 JP1986
Posted
I am in no way suggesting it is CFS, i am not qualified to say such things. I have to say it does not sound like you have it from what you say. You seriously need to get a diagnosis sorted so you can work out how to handle the issues. Diet is always important as mentioned on here but likley not a cure. What country are you in?
I have always lived with depression, certainly my whole adult life and am now 43 so i know them feelings. I am on medication for mine and i do reccomend it but its not for everyone and some dont belive in antidepressants. I would try talking to as many people as you can about it if you have people you are close to. When i became ill my so called friends disapeared as well but luckily i have family close by and have had to move back to my parents for the last few years.
The suicidal thoughts are always awful but never let it beat you, your life is worth something always. NEVER let the system forget you are there. I live in England and disabled people have had a real bad time lately with the benefits system and so many are easily lost. Stick with it, get your goals done one at a time ie diagnosis.
Some of them meds you have taken seem to be highly addictive also, i know they are needed for some, i myself have taken codeine. Has your doctor sent you for any therapy? that may benefit you. Keep in touch and take care.
JP1986 AndyC77
Posted
hi Andy
thanks for the reply, i live in England too, im 33 but living with my dad at the moment which is lucky. i teach drums and gig but ive had to quit gigging as it has become too difficult. drumming is quite physical and after an hours playing im so dizzy and my ankle joints ache, plus im fighting off panic attacks. but not so much fatigued.
ive been to the doctors about 30 times in the last nine months usually in a very bad state. ive been to crisis centres and A and E a few times when the suicidal depression was too bad. the doctors have been good done every test they can think of and sent me to any mental health provider they think would help. but ive exhausted those options and am currently trying a mindfullness aproach with a new therapist which my dad is paying for. which i find incredibly difficult.
im seeing the doctor tomorrow and will bring up chronic fatigue.
ive been on the highest dose of escitalopram for 5 years. its obviously not working very well but im too scared to alter it as when i have done in the past, its created absolute havoc which my body wont survive in this state.
its just horrible how small my world is getting and how close suicide or picking up a drink (havent drunk in 9 years) is becoming.
ill try to keep plodding on!
are there specislists in CFS that i can be referred to?
thanks again
AndyC77 JP1986
Posted
Hi JP
Wow drums eh, I wanted to learn drums when i was still healthy, my mid life crisis i think. Far too physical for me though now. That is so frustrating that you cant get a diagnosis, i really dont know what to suggest. I went to a fatigue clinic southcoastfatigue.co.uk but i found it a bit useless for me. They just want you to rest evrery couple of hours and learn to switch your brain off. Its fine for some i guess. I am in a kind of permanent state of rest as most physical activities leave me worse off. But at least i have some kind of control i guess.
I found some helpful stuff on youtube so maybe you might to. I know what you mean when you say your world is small, i feel like my cat. I hardly ever go out of my tiny circle and im always asleep. I think finding other people with the same or similar issues can help a lot so maybe try to find something online like this site. The more things like this you are on can only help i guess.
I am sick of staying in this small room at my parents so am looking for a new home this year, just off to look at a place now but its not easy finding an affordable place and a landlord that accepts people on benefits. I am lucky though, at least i have a place to live. Talking about meds i was on an antidepressant for many years but i found that they made me very tired so i changed to sertraline about 5 years ago and they are much better. I was on 100mg but they were making me so dizzy i had to drop the dossage to 50mg. It was hard at first but my depression is very well under control i would say. Lastly i would say stress and mood play a big part in everything so maybe try meditation and keep a decent mood with some relaxing music. I wish i could help more.
JP1986 AndyC77
Posted
thanks Andy,
i apreciate the help! yes ill keep ploddibg on and trying to find a diagnoses. the dr referred me for tests today so we will see if anything comes back useful! thanks again for your help and good luck with your house!
AndyC77 JP1986
Posted
Thanks, Keep chatting though maybe send me an email.
Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
Solsikke JP1986
Posted
I too am sorry to hear about so many problems. They do not sound like ME/CFS to me, could be a number of things. I think the most important thing is to go to the doctor again and Not let him or her reject you with an explanation of mental problems. You do not do that without making sure of physical explanations first! Is there anyone who could go with you?
DlTooley JP1986
Posted
There is overlap between ME and various forms of auto immune disease. The rash makes me non-proffessionally think of Lupus.
JP1986 DlTooley
Posted
hi yes that was my first thought. ive had all the possible tests for lupus which have come back negative so im guessing it isnt that unless i got false negatives
DlTooley JP1986
Posted
Maybe the best thing you can do in any case is live as healthy as possible Lots of produce, organic if you can find it and few processed carbs, healthy oils to taste, and less meat. Avoid toxicity, including people, and get regular exercise.
If it doesn't get better seek a second opinion, sooner if it gets worse.