Possible CFS

Hi, Sarah:

I live in the U.S., not the U.K., so can't help you with the referral process. But, yes, I had the same experience as you did with doctors. My GP told me it was all in my head and I needed a vacation. I knew I was very ill and went to a specialist at UCLA. He diagnosed me within about 20 minutes. (I'd previously had bloodwork done that came back negative.) You experience with doctors, unfortunately, seems to be the rule rather than the exception. I can't tell you all the posts I've read saying the exact same thing as you. So the first thing is to know that you're not alone. Unfortunately, your experience with your famly and your partner is also common. It's very sad, because we not only are we so ill, but we're insulted by those around us who should be supporting us. Your symptoms are spot-on for ME/CFS and should be taken very seriously. Don't let anyone, medical professional or otherwise, tell you it's all in your head. The most important piece of advice I can give you, as someone who's been dealing with this for quite a while, is not to push yourself, and to get plenty of rest. If you go to work before you're fully recovered, you can endanger your health for the long term. Laura Hillenbrand is a famous author who suffers from ME/CFS. She wrote "Seabiscuit" and "Unbroken." If you Google her name and "New Yorker" you'll find a very interesting article she wrote about what happened when she got ill.

Hi Sarah, I had the same problem with my GP, but like you I found one that listed to me. The CFS clinc is great, and will help you with every day life, you could also ask your counciler about your work situation. You need to pace your self, it's easy said then done!!. Google it, and make sure you take your partner your first CFS appointment.

Tori.x

Hi Sarah.

Your story sounds so familiar. i was at first diagnosed with depression although i was fairly sure that was not the case; more distressed than depressed. The prescribed medication had a bad effect and I stopped it immediately. My subsequent blood screenings all showed a high white blood cell count (since then i have learned this can be a feature of ME at the outset) but was told each time I must be fighting off an infection. My struggles continued: I changed my job and deferred my course at university (never to return).  All my symptoms match(ed) those of ME and fluctuate(d) in severity from fairly ok to pretty damed awful but in the main manageable with, careful pacing and plenty of rest.  6 years into my illness I developed diabetes and then, all symptoms along with the fact of my age - (pre-menopausal) were explained away by Dr's by these factors. I have had more blood screenings than i can remember, several scans, heart traces and 2 exrays. None so far have concluded anything else. Last year I also was found to be defecient in vitamin D and put on suppliments which did result in improving leg pain but did not noticably relieve the other symptoms.  At last, after almost 9 years the dr finally refer to a specialist.

As for the atitude of friends and family - My husband sort of gets it because he sees how I am when I'm ill - but mainly i try and hide away and avoid events and situations I know I cannot manage because, I'm sorry to say, it's not something other people easily do understand and perhaps we shouldn't expect them to. After all, how does one make sense of this? 

Tips:

Take control of the part which you can - yourself; and that means laying down your own boundaries and being able to say 'no' to others. remember that you are not responsible for other (adults)

Plan ahead for unavoidable events that will require extra 'spending' of energy and try to build in a rest period after the event by booking some leave to REST and do not be tempted to over-do things.

You could ask if you can reduce your working hours or look for another job.

Good luck with your assesment.

 

Thank You for your replies it's good to know We are not alone! But it is sad that my case seems to be the rule with doctors and other people. I will google Laura Hillenbrand as  suggested.

Unfortunately because of the vitamin D deficiency I have to take supplements for 12 weeks (currently on 3rd week) have a repeat blood test before the GP will send the referral. So think it will be a long road until referred.

My partner has shown me how much he doesn't understand this morning by asking me to help him dig the garden up today. He didn't like me saying it's not a good idea especially as meant to be trying to go back to work tomorrow! Just rolled his eyes and said why? I try to explain but he has the knack of making you feel lazy, but it's a different story when he gets man flu! Whenever I try to talk to him about it he seems distracted and changed the subject! Been luckily that his mum has been living is for about 6 months and she understands. She has taken up doing the house work for me and cooking most dinners but she moves out soon then it will be all down to me again.

I'm also worried as wanted to have children in a year or two but now worried about how I/ we would cope with pregnancy and general life! 

Sorry if it seems like I'm moaning but just nice to speak to people how understand and are going through the same experiences. 

Hi Sarah,

I experienced almost completely the same as you, umpteen blood tests all of which were normal and no answer for why I felt so crap all the time. Your symptoms are almost identical to mine (except for the vitamin D). I was referred to an endocrinologist on the NHS with an 18 week lead time... After about 10 weeks I was desperate to get an answer and a diagnosis and I decided to go through bupa with the same consultant and got an appointment the same day! 

I have now been off work for 3 months and would advise that you put your health first before anything as pushing yourself too hard can have a detrimental effect.

I hope you are able to get a diagnosis and you feel better soon! 

Kristy

Hi Sarah

I am new to this forum but I saw your post and now, in the last stage of recovery from CFS, thought that I may be able to offer you some helpful advice. I apologise as this may be a bit long winded but there have been a lot of steps to get to this place.

I experienced something very similar to you; I caught glandular fever and couldn't shift the feeling after of illness and extreme tiredness. Again the GP could not find anything subsequently wrong with me once the virus had passed but fortunately I was referred to the occupational health physician within a few months of this happening.  He told me I had post viral fatigue (which is common with glandular fever) and that I needed to just rest for now.

Fast forward a year and I still had all the symptoms of this post viral fatigue.  I had got into a pattern of what I now know is called "boom and bust" where I pushed myself on a good day, doing as much as I could then I would crash for maybe a week and be bed ridden unable to even make food or shower.

The physician told me that I had developed CFS and that I was also probably experiencing some mild depression as I was not able to live my life. He referred me to a lady who specialises in CFS. She is based in the Manchester area but she only does private work. However he also referred me on the nhs (this was March 2014) and I am yet to see anyone via that so seeing her was worth it!!

Her programme (which is recomended and very similar to those in the NICE guidelines - I would recomend reading them!) involved stopping the boom and bust and starting with a time chart of every activity I did each day.

What she got me to do was write down hour by hour, on a chart, what activity I was doing.  Activity includes anything from showering, eating, washing dishes, to running 10 miles or equally anything particuarly stressful as stress takes up energy.  It's basically anything that is not lying or sitting down resting peacefully.  It can also include intellectual stimulation so while you may be lying in bed if you are reading something say work related, that is counted as activity.

Rest and sleep are separate.  I was to mark down "rest" when I was awake but lying or sitting down, for an extended period, and "sleep" when I was napping.

The idea is to match your activity time slots with what you need as your rest time slot then gradually build up the activity and decrease the rest. You must also consider how vigourous the activity is as you may need more rest after a 20 minute walk or a particuarly stressful period than if you have a 5 minute shower.

Initially, for example, by this point I was able to do about an hour of activity (such as getting up, making breakfast, showering, getting dressed and putting on make up) an then I would need to rest for 2 hours after. So I would mark on my chart what exact activities I had done in that hour then mark how tired or ill I felt and how long I had had to rest or sleep after.  Once I could do several hour activity slots each day, coupled with my 2 hour rests and was comfortable and not so tired in the evenings that I felt ill, I upped it to an hour and a half with 2 hours rest and so on.

I am now up to 4 to 4.5 hours activity slots with an hour and a half rest slot to match! And I have started exercising everyday to build up my immune system again. I am finally supposed to be starting a phased return to work in March.

Another piece of advice I was given was to eat healthily and often.  I know that CFS has an effect on your appetite and can interfere with your gastrointestinal system too, but the ide of eating often is to boost what little energy stores you have. Things that are slow release are best so I began to partly follow the GI diet and I actually lost weight eating more which was bonus!

I hope at least some of this was helpful.  Again I apologise for the essay but if you have any questions please feel free to ask!

Louise x