Do I have CFS? Please help
Posted , 10 users are following.
I have been diagnosed with migraines for the past 3-4 years and i'm convinced there is something else going on with my body due to being so sick all the time. Anyone who knows typical of symptoms of CFS I would really appreciate to hear from as I am desperate for answers and help to get better. I've suffered the following for the past 3-4 years:
-Nausea every day, severe nausea when getting an "attack" which sometimes leads to vomiting. Leads me to be bed ridden lying as still as possible.
-Needing at least 14 hours sleep in order to attempt to get out of bed.
-Flu like symptoms, pains throughout body. 1-3 times a week and bed ridden. Can last 2-7 days.
-Exhaustion to the extent where I cant walk or talk. Triggered by eating, walking for 5-10 minutes, talking for more than 10 minutes, concentrating for more than 10 minutes. I used to be a figure athlete and now I can't even exercise at all.
-Headaches that are daily and only become severe 1 or 2 times a month generally with the flu like symptoms.
-IBS
-Lipomas on arm
-Ear ringing, like underwater, daily
- Visual disturbances daily
-Heart palpitations and chest pain, tends to come in clusters then disappear for a few months
-dizziness and fainting sensation when resting
I rarely get respite from the nausea and exhaustion that are ruining my life. Ive had to stop work as I was sick every single day, every night, every holiday, every weekend bed ridden.
I'm confused with the migraine diagnosis as being the sole diagnosis due to migraine symptoms not being the worst symptoms that are debilitating me and the frequency of the symptoms. I'm sick every day, exhausted, spend most of my time in bed. I get the odd few days here and there where I'm ok but other than that I'm really suffering.
Please help if you know what this could be.
Thanks
Angela
0 likes, 28 replies
jillian27195 angelface029242
Posted
Try looking up gluten ataxia. I had many of the same simptoms including occasions when I could not move or talk. I was diagnosed as having cfs. Later another doctor told me to go on a gluten free diet. Within a couple of weeks I was almost normal. I still have tingling hands and a strange sensation in my head for which I am about to have tests for nerve damage. I did not have nausea like you but I am non coeliac gluten intolerant . Try going on a STRICT gluten free diet (no soy) for 2 or 3 weeks and see if you improve. You have nothing to loose but have a chance of getting your life back. Good luck.
tyler04178 angelface029242
Posted
This sounds horrible. I've been going through similar things. My main symptoms are vision disturbance and sleep apnea. But by far the worst part is the vision stuff. Tons of floaters blurry vision spotty vision and like weak vision. Also headache feeling in my eyes. I'm undisguised but I'm questioning cfs/ME as Mri, lumbar puncture,and EEG are normal.
janet71271 tyler04178
Posted
tyler04178 janet71271
Posted
Yes got a c pap machine a week ago but haven't really noticed a difference at all.
janet71271 tyler04178
Posted
My partner uses a cpap machine. His apnoea was moderate . is well controlled on the cpap according to the monitoring it records. It take a few weeks to get used to wearing it. He wasn't comfortable with it to start with. They have him a full face mask but it terrified him. Having been a respiratory nurse I was able to advise he could be offered a different type of mask. A nose mask. So I contacted the sleep study lab and he went to pick up a nose mask. He got on much better with it. And once he got into regular use he did start to feel better and the daytime tiredness resolved. It is all second nature to him now Has been a few years though.
tyler04178 janet71271
Posted
That's awesome that he's doing better. I've used mine for a week now. Honestly I feel absolutely no benefits from using it but I'm diagnosed with severe sleep apnea and in the sleep lab stopped breathing 67.5 times per hour so the doctor told me I need to wear it because I could have respiratory failure in my sleep if I don't. I believe I've had sleep apnea for the past ten years but not had it diagnosed until recently. I'm not sure if this is what's causing my vision problems or not but after I have been using the cpap for a week I'm thinking I'd see some improvement by now.
janet71271 tyler04178
Posted
Hi Tyler
There are a few things to take into account here. Firstly every individual will start to feel the benefit of CPAP at different times. By this I mean some quicker than others. Also it depends on the severity of the sleep apnoea. Yours as you say is high per hour. So it will take a bit longer than say someone with mild apnoea.
One week is no time for anyone though to feel any real benefit. You do have to give it time. It is more likely to be a couple if not three or so months to feel the full benefits. Dramatic results won't happen rapidly. You will likely feel small gradual improvements . Depends what all your symptoms are. And you do need to use the CPAP every night during all the time you are asleep . Some machines won't record properly if not on for at least four hours. And it needs regular recordings so your progress can be monitored. Also always make sure your mask is on properly with no leaks.
I am not your Dr so would never tell you to do this or that , or scare you. I don't even know you ! But I am experienced regarding sleep apnoea and CPAP . I was a paediatric respiratory nurse . Plus as I say my partner has it. So I hope you don't think I am just saying stuff ! Your Dr is completely right that you could have respiratory failure whilst asleep without the cpap.
Apart from your eye problems, I can't really remember what other symptoms you have . Fatigue and easily falling asleep during the day are definitely symptoms of sleep apnoea. And I think you said you are tired etc.
janet71271
Posted
Sorry posted last message before I had finished
If you have had sleep apnoea for a while untreated, your eyes could be affected because of it. As your Dr will have explained to you, sleep apnoea results in low oxygen levels on and off while you are asleep. Low oxygen levels can have various impacts on your body.
Other problems often associated with sleep apnoea are heart problems which in turn raise the blood pressure. Have you been tested for glaucoma? Which results from pressure in the eye caused by optic nerve damage. Which raised blood pressure can cause.
I can't remember if you have seen an eye specialist or not. If not, I personally would ask for a referral. As there are several eye conditions that need to be investigated.
Wishing you all the best and I do hope you can get some answers soon. Take care
s47448 angelface029242
Posted
Iv been ill and diagnosed with ME for 4 years with many symptoms and after finding out I was intolerant to certain foods I cut them out for the last 6 months and I am well again which I still cant believe.
I think its a subject that is not really spoken about much but a lot of illnesses are caused by what we are putting in our bodies and for me, having cows milk and other foods in my diet without me realising it was crippling me. I wish more people with M.E would explore what they are intolerant to as part of the process.
janet71271 s47448
Posted
Hi
Food intolerance is a subject well known about and talked about a lot. A lot of people who have ME and fibromyalgia have food intolerances . I have myself . I am gluten, wheat and dairy free and don't tolerate soya products too often. I was instructed to go on an exclusion diet but an ME research professor I saw twice years ago. Which confirmed my intolerances. I already was aware of them though. I have had ME for 21 years now and can say I am by no means better infact I have gradually deteriorated over the years. And food had nothing to do with my developing ME.
I am even worse if I eat these things especially my IBS. I never have caffeine either.
It is really good to hear your cutting out cow's milk has transformed your health. Diet does help some but not everyone though. Best wishes
s47448 janet71271
Posted
I have seen discussions on food intolerance however, I'm not sure how many people explore proper intolerance testing as opposed to randomly cutting the obvious food groups themselves to no avail. I wish I had somebody suggest a test to me in the early days to save so much grief.
It was when my nutritionalist advised she has dealt with a surprising number of people diagnosed with M.E that turns out to be severe food intolerances manifesting itself as M.E symptoms. I had to share my findings incase it helped at least one person.