Diagnosis - Mild CFS?
Posted , 4 users are following.
Can anyone talk me through the process that they went through getting diagnosed? When reading a lot of these posts I realise I am very fortunate in that my suspected CFS is milder than most.
I had a nasty virus, suspected glandular fever 1 year ago although my test came back negative and it was never diagnosed. It was basically a flu like ilness for 3 months, i then recovered and was fine for 6 months, and then after a heavy week of drinking/socialising I began to feel unwell.
My symptoms are problems regulating my body temperature, general fatigue, aching and heat most noticeable in the upper arms, weakness, uncontrollable tremors(when cold especially) no appetite and a nausea in my throat from time to time. I've been suffering since June from this and as we begin to move into October I realise I am approaching the 6 month mark where it says doctors will diagnose you.
Luckily for me I am still able to go out and do things, to an extent. I do not socialise except for coffee/visiting someone at their home where I am able to sit down, I can attend the odd university lecture/seminar as long as I have a good restful sleep in the evenings. When I do suffer from the worst, I have to just lay down till I feel some kind of strength return. I often find myself needing rest days if I have been out 2/3/4 days in a row even just doing a mundane task like walking into town and back.
I haven't suffered from any cognitive problems so far, although sometimes I do have fuzzy/foggy head days, where I feel cloudy and depressed, luckily I think this has only happened 3 times.
Does this sound like mild CFS? What is the diagnosis process? Has anyone had any experience with mild CFS and the kind of recovery/support needed.
Thanks in advance
0 likes, 6 replies
pixie22 eleanor12697
Posted
From my experience, I would say that your symptoms fit with ME/CFS. The diagnosis starts with having tests for everything else it could be (eg anaemia, thyroid problems and lots more) and if these all come back negative , then CFS could be diagnosed. At present there is no definitive test for CFS. My symptoms have fluctuated over the years that I've had it, between times when I worked part-time in a library, to other times when I would stagger to the school around the corner, leaning on a stick, drop the children off,then stagger home and lay down on the sofa until it was time to pick them up in the afternoon. As to recovery and support, all I can suggest is that you get as much rest as possible when you need it, don't push yourself too hard because that can put back your recovery. Some people recover well, others do not seem to. As I say, it's been there for me for the last 30 years, i've just had to learn to live with it, but everyone is different. I wish you luck!
eleanor12697 pixie22
Posted
Thank you for your reply I've had the standard blood tests and they told me that there was nothing abnormal in the results, have a doctors appointment next week to try and get a proper diagnosis. Not sure I've had thyroid tests, but definitely had the standard blood tests, and iron tests etc.
I am seeing a homeopath and have experienced weeks where I seemed to be recovering completely, have then gone to the gym and relapsed again. I guess I shouldn't push too hard, especially when I know there are many sufferers with more severe cases than me.
russ151 eleanor12697
Posted
Don't push yourself rest more than you think believe me I did the opposite there's a good chance you can make a full recovery some supplements are helpful magnesium being one I opt for the sprays helps me with muscle aches boosting your b12 won't do you any harm rest take it easy try meditation to relax when you are struggling hope this helps a little
eleanor12697 russ151
Posted
Really appreciate this, I'm 20 years old, extremely fit and healthy / sporty before this and am positive that I'll make a full recovery. Any specific supplements or brands? Heard about B12 and Suma powder before that's good for it?
I think I'm making progress but it is very easy to push yourself when you feel a bit better. I'll remember to take it slow
jackie00198 eleanor12697
Posted
Hi, Eleanor. Yes, it does sound like mild ME/CFS. For my diagnosis, I first went to two GP's who told me it was all in my head. They did bloodwork to rule out other illnesses. I knew they were wrong, so I then went to a specialist at UCLA. He first looked at the bloodwork, then asked me several questions. He diagnosed me within 20 minutes. This was only after 3 or 4 months of being ill. You don't have to wait 6 months for a diagnosis! That's an old story that's been changed with newer studies. There's a lot of good news for you. Because you've only had ME/CFS for 1 year (if indeed that's what you have), and since you have a mild case, there's every chance you'll get better. The crucial thing--and I can't emphasize this enough--is that you don't push yourself through the fatigue. Dr. Lucinda Bateman is a foremost specialist here in the U.S. She says it's key for recovery to stay within your energy envelope and to prevent crashes, rather than doing too much and then trying to recover. By the way, the appropriate specialist to see is usually an infectious disease doctor or a rheumatologist.
eleanor12697 jackie00198
Posted
Thank you so much for your response! I saw a GP during the 3 month virus, I was told there was nothing he could do, he couldn't diagnose me and it was normal as a student to have a 3 month flu. He told me to go to boots and buy nasal spray! Funnily enough it didn't help. I have now changed doctors in my student town and have an appointment booked for next week, if they don't offer support I will look for a specialist / private healthcare.
That's great to hear about the newer studies, it's more just a diagnosis so I can explain to tutors/friends/family why I'm struggling and sometimes can't meet deadlines / appointments etc. Also for my own peace of mind.
I have actually only been suffering with the fatigue for about 3/4 months and it's only been bad for about a month, I had 6 months after the virus completely trouble free. Also weirdly I have not had a cold or flu virus since I recovered in December which is strange for me, normally get them regularly.
Again your last point is very helpful, I'm often greeted by constant waves of "you should just get up" "if you do something every day you'll get better" and I just have to explain my body can't cope, another reason why I'm desperate for a diagnosis!!
Thank you again for your words