Recently diagnosed with CFS, have I been given the right advice?

Hi Firefly,

I have a similar story. As a former athlete (triathlon and marathon 6+years) I started feeling unwell, just that off feeling in early November 2013. I was working in a physical warehouse job at the time and was also training at the gym, running etc 5 times week but just thought to push through it. Ss I was very conscious of my diet, supplements etc I felt I was on top of things. And i had been studying naturopathy a number of years, iand felt great because of it, there was nothing that could 'get me' right ? As the weeks/months passed I gradually became worse, the most noticeable part was the fatigue in both legs, no pain, more like a deep penetrating cold like stiffness, energy levels were horrendous. I felt as though I was dying !The leg situation has improved a lot, took about 2 months. So NOW, Mar2014 I still have unrelenting fatigue, I can walk and do basic tasks but my life as I knew it is effectively over. I've noticed the past week slightly swollen lymph nodes on my right groin, GP says not lymphoma, but am still very concerned by that. So all in all can't make much sense of the situation, my white blood cells have been on the low side, normalised lately but they seem to go up and down. I've just recently started acupuncture and herbs at a local TCM centre. Not cheap at £55 acupuncture and £25 week for the herbs but at this stage, 4 months in I am becoming very impatient. Awaiting to see a haematologist. I'm currently staying with my father and if it wasn't for him I don't know how I could cope with life. I like you feel I have to force myself up from bed each morning, it's a real struggle, prior to becoming unwell I was out at 6-7am either running 10 mile or swimming 30 odd lengths at the local pool. How I yearn to be that person again ! Good luck. If I find anything that works I will be sure to come back and post.

Just to say I have been diagnosed with 'post viral fatigue'.

Hi David,

Thank for your reply, sounds like you have had a hard time of it like me. My white blood cells have been slightly high also but they said that's most likely due to the illnesses I keep getting. I have also had swollen lymph nodes however they have gone down now. It just seems like one thing after another. As with you it's been life changing, I have some good days but if I try to make the most of them I pay for it the days following. I really hope you find something that helps you get back to normal and would appreciate if you let me know. Take care

Hi Firefly

I also have children (3 and 5) and know how hard it is to get up and carry on - i was also working on top of this as of 2 months ago and had to give up...mine has been a bit longer 14 months and also have the swollen lymphs...they are STILL up and have been the whole time...my throats and mouth and fatigue are worse problems...I also have trouble sleeping

One doc said PVF another fibromyalgia (as was getting pains also) another said both....but recently a homeopath said CFS / ME - this makes more sense to me

I have all the viral symptoms and like you have good days and bad...but I am better than i was in beginning...I wanted to say it does get better...im not cured but am ble to take care of kids - its probably due to acceptance, patience and keeping positive...im on a host of supplements and through trial and error have found amitriptyline helps me...mainly because i become manic on any of the stimulating anti ds...i do think the setraline will help..i know others it has helped

If you ever need to talk or vent about kids etc send me a message..i soooo know what you are going through and i hope we all find answers and solutions to the cause of our problems

Take care Jacquie x

Hi FF,

I have had very similar symptoms except for the nausea. The legs were the worst thing for me too. Does sound like it could be CFS, but these symptoms can be similar to a lot of autoimmune probs.; however you mentioned you have the diagnosis. It's tough when you have to keep going when children are involved, but this can also be a blessing, as its important to keep going...however you have to learn to listen to your body and take rest periods and break up activities that tire you. Graded exercise therapy is helping me and I'm due for some CBT soon. My understanding is that CFS incorporates Fibromyalgia, as Fibro can be a stand alone condition. I also take supplements as blood levels low on quite a few things like magnesium, iron and Vit.D, so it might be worth getting them checked out. Hope that helps JK

Hi guys, further developments for me today. I decided to mega dose on vitamin C. Started the morning with 5 grams, felt ok, 5 minutes later, 5 grams more, still ok got upto 17 grams. Went for a walk, didn't feel anything particularly benefical, 30 minutes later I was for the first time since the beginning feeling somewhat 'normal'. Really surprised. I ran out of vit c tablets but am buying the 1kg tub from Holland and Barrett tomorrow. ALSO I am always researching PVF. The symptoms I have that seem unique are the circulation problems mainly to the hands, with the right hand often but not always markedly more redder than the left. Anyway has anyone considered being tested for LUPUS(sle). I am going to ask my GP about this. I also came across mistletoe therapy that some people are using not only for cancer but for auto immune conditions, now surely if we have been over 6 months into this we must qualify. From my own research it seems clear some people use ISCADOR for lupus with great success. Please look into this and let me know what you think, give vitamin C mega dosing a try. Take care.

Does anyone else feel that they are suffocating with CFS ? I mean I was a super fit athlete prior to this nonsense. It's like you feel like a zombie, anyone else get this ? For me 90% of my usual enjoyment for life is impossible. I sometimes notice it is harder to breath and get panic attacks.

yes - i get this! its worse when im really fatigued, ive got used to it now though and try not to panic and just put up with it...it feels like you cant breathe properly but it passes...its not my worse symptom, but i remember when it happens i feel like i might possibly die

david - with the vitamin c thing, im on 1000mg a day and i tried 2000mg once and got reallly bad heartburn...i wonder if i would get better with mega doses? I also know thats an adrenal fatigue problem and mega dosing helps this

ive been tested for lupus - esr was low and ANA showed no positives

Thanks Jacquie.