Posted , 11 users are following.
Can someone help me shed some light on why I feel so horrendous! I have been suffering with extreme fatigue and exhaustion for about 8/9 months now and its affecting my everyday living. Any exercise makes it worse and takes me 2/3 days to be able to do anything. Im a nurse so have a hectic work schedule and ive been forgetting things and not able to concentrate. I have pain in my muscles and a pins and needle sensation down my back
My eyelid twitches and I have blurred vision.
I have frequent mouth ulcers and water infections so my immune system is affected but ive had tests done including FBC ESR thyroid diabeties anaemia b12 dificiency iron HIV Hep B urine samples and bowel checks as I was diagnosed with IBS last august. All other Tests were normal.
My diet is healthy to accomodate my Ibs and I drink plenty of fluids, take multivitamins daily and no change. Im struggling as my doctors seem to be ignoring everything im saying. I have migranes now and disturbed sleep and my emotions are all over the place. I get irritated easily as im.so exhausted. Some days I cant physically get out of bed or do everyday activites like washing my hair. Im 22 and feel like im 82! If anyone can suggest something to do I would really appriciate it
0 likes, 22 replies
im 52 with fibro & cfs it's hard but there is life after these illnesses !!
the main thing is try not to panic keep at the drs & change drs if you don't get help
with the right medication & other practical help you will get through this
hope this helps a little take care. Dawn xxx
Thank you so much for replying, feels like no one understands it sometimes. Il keep on at them if needs be I would pay private if it means getting to the bottom of this faster. Thanks again take care xx
But you can recover. It is slow but it happens very slowly. I have been free of the horrid suite of symptoms for decades now. I still have to be careful of over exertion.
it seems that the standard 'exclusion tests' for the most common conditions have been completed. can u say what the reading was for your b12 ? you can be symptomatic with a 'low normal' b12 reading? also, it's important to know your vitamin D levels?
do, however, have a read of the criteria for ME/CFS. there's a definitive diagnostic criteria for this condition. have a google of the many criterion: for the UK 1) The Oxford criteria, 2)The Fukuda criteria, 3) the Canadian guidelines (Canada) and 4) The CDC criteria if in the US.
this may help expand discussion with your Primary Health Care provider.
Thanks for replying, my b12 was normal and my vitamin D were normal also (forgot to put that down) . I know they have to rule out possibilities its just hard waiting for an answer. Il have a look at those thankyou so much for your input I really appriciate it
All the best xx
do u know the actual ''levels'' in ''numbers'' for your b12? GP's often say the levels are ''normal'', if they are just above 200ng/ml. one can have marked neurological symptoms with levels around 400 ng/ml. and different path labs have different reference numbers for ''normal'' levels.
ideally b12 def. should be diagnosed by the clinical symptoms as the standard test is most unreliable. this test measures ONLY the circulating b12 in your serum, not that the active b12 as in your cells.
if u work in a hospital, it might be worth your while having an MMA (Methylmalonic Acid) test done together with a Homocycyeine test. the combination gives a much clearer picture of b12 status.
the MMA measures the ACTIVE levels of b12 in your serum. your GP won't do this one as it's expensive. but u might get a kindly Doc in the hospital to order them for you. this is the least you deserve for the work you do.
btw, GP's are notoriously under informed about b12 diagnostics & treatment. they consider it an almost extinct disease. it's easily & cheapely treated.
Sorry to hear you are ill.
My 19-year-old daughter has ME/CFS .She has had all the regular tests just like you and the Dr's just do not want to commit to saying its ME/CFS. I see her bent up double with pain when she has a water infection etc. and as a parent, I feel helpless seeing her like this. ME/CFS takes no mercy or prisoners it is a terrible illness to have, I have lost count of the time I have been told I look well when I have been dead on my feet with this condition… and feeling like your 90+ is very common feeling.
You might have guessed… but I also have ME and I have suffered for 20 years I have lost a couple of great careers because of the illness. Has anybody in your family history had similar, as it can run in families I think?
You need to stay positive and look for perhaps methods of coping while you are trying to get a doctor to recognize the condition and God only knows how long that can take, but be persistent and change Doctors if needs be.
Do you have a tropical disease department in a local hospital? These people may be of use to talk to, as many patients they treat have similar pain and fatigue as ME/CFS sufferers have.
Can you take a career break of a couple of months to rest up fully as the most active of people tend to suffer from ME/CFS (over achievers was the term I was told…) ME/CFS is covered in the Equality 2010 act so employers have to accept you with ME if your diagnosed officially. So do not quit your day job just because of ME/CFS the employer has to make reasonable adjustments for a person with ME/CFS.
An example of this is my employer has bought me a specialist chair (£700) to sit and work from and provided me with my own office on the ground floor and a “quality” leather recliner for when I need it. They have accepted I have a condition that needs support from them for me to function in the work place. (As a plus I have a lot of collogues wanting to come and have a chat with me and sit in my reclinerJ)
Most important, rest when you can and don’t try to do too much, as doing so will make you bad for 3-4 days afterwards stay positive and research all you can, I wouldn’t wait for a doctor to come to any decision on ME/CFS you need to steer them in the direction you feel they need to be looking! I have taken print outs to Doctors appointments outlining the condition and left them with them to look through when they have a chance… and this has worked with some Doctors I have seen in the past, as they are busy intelligent people and a “handout” is useful. One Doctor said what is this for? I simply answered I have this 24/7 and as such I have developed an understanding of the condition this is just a few bullet points and info on it… he has turned out to be the most helpful doctor I have seen todate.
Join this discussion or start a new one?New discussion Reply