Cfs worst possible timing ever

That you've not been ill for long (it probably doesn't seem like that to you) means that you do have a better prognosis than most. I'm afriad that no-one really knows how to improve it though. Personally, I'd just spend some time doing whatever you feel like and hope that this lets your body sort itself out a bit. Good luck.

Yeah it is indeed a hard pill to swallow although I think sometimes you just have to surrender to it for a while...is almost like the fighting against it makes things worse.  I have also had CFS for 7 months and had to give up my job/course and stuck in limbo waiting to see if things will improve.  Is just so strange going from being really active (I am a gardener) to having to lie on the sofa all day feeling like life is passing you by.  But recently I decided that this is just what is happening and it will pass - in the meantime I have stopped focusing so much on my body and decided to see it as an opportunity to improve my mind!  Been meditating lots, trying to learn Spanish, writing music and watching endless documentaries.  Is interesting you said you had previously had a few tough years, this was the same for me and I think our bodies sometimes can't cope with emotional or other stress and have a wee shutdown.  I am at the point now where I can walk a bit longer and do some yoga (which has been the best form of exercise for keeping muscle tone/good circulation and would highly recommend for people with CFS.)  I managed an hour down the allotment today and although in some pain and knackered would never have managed that until recently so things improving.   I also think breathing exercises are really important as the pain and stress seem to have caused me to shallow breath which is not good for the body.  Another really beneficial thing I have found is myofascial release - you can check this out online but feel has helped.  Yeah so I reckon trying to relax as much as possible instead of constantly worrying about what is happening is so important - I know it is really hard!!  Focus on what you can still do....listen to music, read, draw etc.  Hope you start to improve soon.....

Wow you seem to have had every test known to man jay lol but to be serious you never mentioned autoimmune disease  , peroxidase antibodies test and thyroglobulin antibodies test? Worth looking up ( I AM HASHIMOTO DISEASE , A LETTER FOR PATIENTS  FAMILY AND FRIENDS ) sounds like a possibility . Sy

Hi Jay,

I am really sorry that you are feeling so awful.  It can be mind blowing as we are all aware.  I was diagnosed with CFS/ME in 2008, so am in my 7th year.  I managed to hold down a part time job, when I was first diagnosed, and I was in my middle forties.  I had a really bad relapse in 2013, and haven't worked since.  I was pretty much housebound and found walking difficult.  However, over the last few months I have improved greatly.  I can walk a little further outside now, I am not in so much pain, and I am sleeping less during the day.

I personally think the key thing is not to give into this illness, BUT do not push yourself to the extent that you make things worse.  It is a matte of balance.  If you know within that you can not achieve something because e.g. too much pain etc then try on another day.  Just do what you can when you can and listen to your body when it says rest.

It is very difficult to predict how long for a time of recovery, unfortunately and we have to be honest, some people never get to the stage they can call remission or recovery.  You do have age on yourside which is a bonus.  Make sure that you have good pain relief, plenty of hot water bottles as extra relief, and family and friends support and ride the storm.

I wish you well and all the very best for the future.

Tx

Jay--So sorry you're having to deal with this. First off, many people with ME/CFS get better, without doing anything. One thing to do is give your body every chance of healing itself by not pushing yourself. It's very easy to get into a push-crash cycle. I know that in the U.K. (if that's where you are), the official path for improvement is graded exercise and cognitive behavioral therapy (CBT). CBT can't hurt, and can be a good coping mechanism. But graded exercise had been widely questioned by many professionals. It can so easily lead to a crash. Eat healthfully. You might find that protein gives you an added energy boost. Avoid sugar and caffeine. Carbs, like pasta, may make you feel more sluggish. Do the best you can to get sufficient sleep. This can be very difficult, I know. Also, reduce stress to the extent possible. For orthostatic intolerance, a well-know ME/CFS doctor, Dr. Paul Cheney, recommends 1/8 tsp. salt and 1/8 tsp no-salt (potassium chloride) in 8 oz of water. By the way, I think the fact that you're 27 also ups your chances of getting better.

Hi,

I agree with jackie00198 in that graded exercise therapy (recommended in the NICE Guidlines) can do more harm than good.  the research articles I've read are very unconvincing. CFS needs a holistic individualised approach where your entire daily activity and energy expenditure is taken into account and it is balanced with periods of rest.   CBT works if you are struggling to get your head around the change in circumstances but many people find their own way of adjusting.  The first thing i'd recommend is to shorten your day and spend more time resting at intervals, until you start to feel better and then re-evaluate.  Don't try to do more until you can feel good doing nothing. 

I am sorry.  I think we all know how you feel.  I got sick at 32 and it pretty much destroyed my life.  However, I've read a lot of science research at Pubmed, and since you are newly sick, scientist recommend no activitiy for 3 months.  Supposedly, that can snap you out of it as long as you are within the first 3 years of being sick.  I know that sounds dreadful, but maybe if you don't do it, you might end up sick for the rest of your life, which is total crap.  Check out the articles in Pubmed online as see what you think.  I would so like for you to get better.  Maybe this could help.  Anyway see what you think, what your doctors think.  Take care, Ravenwood.

I just want to thank everyone for taking time to respond. The hardest part in this illness so far is definitely acceptance. Part of me is in a battle with the other to accept that I have cfs. At times I see myself 'googling' other illnesses hoping to find a definite answer only to end up back where I started. The internet has been helpful but also a source of my anxiety. I try to relax and be stress free but I feel as if every three weeks I have a new symptom, this week being the dizziness and feverish feeling. I hope everything runs its course and gets better. At this time, even if my symptoms stayed the same and didn't progress I'd have hope to hold on to but right now everything has been going downhill. I know I am negative right now but I do hope the next few months bring better days.

Hi Jay, so sorry to hear this is happening to you.  Don't be too hard on yourself about feeling negative, you have every right to feel a sense of loss for the things you can't do at the moment, but do yourself a favour and when you have these days reach out to a relative or friend and have a good moan or cry or whatever you feel like, easier said than done when you're knackered but do it when you can and if they don't understand come on here instead, only been on here a few  says and there's some really lovely and helpful people here who do know how you feel.

I agree with a lot of the above comments that lowering carb intake can help ease the sluggish feeling to some degree, eating healthily will give your immune system every chance (Fodmap may help but I find I have to strip it back much further - currently trying to train my body to run off fats instead but haven't managed to get there yet so please don't take my word for it!).  

As long as you have been tested for coeliac disease, as its important to have that ruled out before embarking on any diet/regime, not sure about the blood test but if you are being tested by endoscope its important to still be eating gluten (i wasnt advised this when being tested - so thought i'd include this).  

As the others have said, it's a good thing you are aware you could have cfs/me so early as that could be your saving grace, it does appear that people who know they have this early have a better rate of recovery - so try not to get too down, there is still hope and positivity for you  

Mine came on very gradually and I had no idea it might be this for years and years.  My new partner gave me the opportunity to give up work and learn from home to retrain, but this has proved extremely difficult as due to its effects on memory and concentration i'm still not there, so I fully understand about what you mean about the dream job.  But even after all the things I feel i have missed out on I still find I have many things to be thankful for.  If i hadn't been through all of this for example I wouldn't be in the relationship I am now.  

You still have every chance of recovery at this point, there seems to be a growing number of people who have caught this early and recovered, also it is starting to look like they are closer than ever to finding the causes/answers, so please look after yourself and keep up hope  

 

Have you ruled out dental issues? Or probably infection in jaw area? As you said when it initially happens, you have ear pressure. I could be related somehow.

I'm very healthy 34 years old male. I had a wisdom tooth with huge cavity in its side that suddenly got hurt after quitting smoking. In emergency, the dentist deadened the nerve and asks for further extraction. Due to several reasons I did not get it immediately extracted. Within 2 weeks I gradually started become depressed. 12+ hours of sleep everyday, pain in the right arm, exercise intolerance, losing motivation, hard to concentrate, intestinal candida. I've even started smoking again to rollback everything. The smoking was only helping on the first week. 4 months after the initial incident I got the tooth extracted. And at the same day my mood skyrocketed, and 6-7 hours of sleep is all I needed, as always before this all happened. Now I'm 2 days off pain meds and everything still improves!

A hypotesis suggests CFS is actually caused by localized nerve inflammation or infection. It wrecks your immune system in some way, too. In my case I can say it was totally correct.

I live in Canada, so I had all my tests done here. I had one more question. With regards to my extremely achey legs/body and crackling joints to a point where I can't walk for more than 10 minutes without having to sit down and also wake up extremely exhausted to a point of not being able to get out of bed, have you guys experienced or heard of others experiencing my severity within a 'few months'? I remember scoring three goals in a hockey game in December and now in March it has progressed to this, I'm just confused and in disbelief at the progression. I was at the doctors last night and they don't appear to care much as my blood work and scan etc are 'clean.' I guess I'm just seeking some reassurance that my experiences so far are not completely out of proportion to what others have experienced. I guess it's my constant doub that this may be caused by another illness that doctors have not yet found. I know I sound like a broken record with these questions but you guys are my only support system right now.