Cfs worst possible timing ever

Posted , 11 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

hi everyone,  so this is my first post and I just wanted to clear my mind by posting what I have been going through in the past 7 months as I feel hopeless. I am a 27 year old male and prior to this illness was healthy and very active as I played sports 4 days a week and danced on a traditional dance team on the weekends. Everything changed on August 2014 as after a stressful/sleepless night out with friends, I woke up the next day with a headache, ear pressure and felt like I never slept. Fast forward to January of this year, all my previous systems remained the same while the headache started to ease but I started experiencing new symptoms such as extremely achey legs and arms, crackling joints, twitching all over my body, coldness of my extremities, extreme fatigue, orthostatic intolerance, heart palpitations, and chest pains. I am practically house bound since January as everything has been getting progressively worse. I got all tests done- extensive blood work, mri and Ct head, spinal tab, chest X-rays and Lyme disease, ms, als, have also all been ruled out. After consulting 3 neurologists, 3 rheumatologists, infectious disease specialist, cardiologists, and countless gp's, the only answer a few of them gave was post viral fatigue/cfs. To add fuel to the fire my engagemeant party is set for April and I finally got a job offer for a dream job that would have started at the end of May. As of right now I can barely walk and feel like I am a 100 years old. Everything was finally falling into place as I had a tough few years after university. This was suppose to be the best time of my life and I have no idea what the future holds and I am scared as I am getting worse. Doctors told me that it may take 8-10 months for any improvement but this sudden onset and progression is freaking me out. I have tried graded therapy to only end up even more exhausted and achey the next day. This ordeal has been a tough pill to swallow and it feels like a nightmare where I can't seem to pinch myself awake. Sometimes I feel like I have something else besides cfs but don' t know what else to do. Any words of wisdom, recovery stories or support would greatly help. Thanks in advance.

1 like, 14 replies

Report

14 Replies

  • Posted

    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.
    Report
  • Posted

    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.....
    Report
  • Posted

    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
    Report
  • Posted

    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

    Report
  • Posted

    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.
    Report
  • Posted

    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. 

    Report
  • Posted

    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.
    Report
  • Posted

    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.
    Report
  • Posted

    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 smile 

    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 smile 

     

    Report
  • Posted

    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.

    Report
  • Posted

    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.
    Report
    • Posted

      Jay: I didn't experience your exact symptoms, but I went from being totally healthy and active to being so ill I thought surely I was going to die--all this literally almost instantly after falling ill. There's such a wide range of symptoms that as long as you've ruled other stuff out, it really sounds like ME/CFS. I've read of so many people having achey muscles and joints, and degree of severity can vary greatly from person to person. Of course it's normal to worry about other illnesses. I've read so many posts here of people who thought maybe they had MS, for instance. But then it turned out to be ME/CFS. I'm very sad to hear, once again, of doctors lacking in both information and compassion. Can you possibly find a specialist? Infectious disease doctors are one possible source.  You're not alone. We've all been down your road, in one way or another. 
      Report
    • Posted

      Hi Jay, my symptoms came out very gradually and I do not have any clue that it was caused by the rotten tooth. This could be different as your symptom that it was happening overnight. I've read CFS symptoms and there are ones the came out gradually like mine and the others that came out suddenly. And before it all happens I was an extremely health person, night and day difference.

      But yes, I had your exact symptom within 6 weeks. Now I'm hypotesized that it is what happened with flu when your immune system is depleted due to CFS. All my symptoms come and go, I don't even recognize them as CFS symptoms, up until my tooth extraction. I had 4 out of the 8 CFS symptoms.

      Dental health are all okay? Never got any root canal treatment? That one is harder to diagnose than mine as some people said it could take years to rot at the root.  

      Have you tried some vitamin B12 for several days and see if it helps relieving the symptoms? Meanwhile I would suggest you to remember all changes to you since several years ago to pinpoint the exact issue. As I was never sure this tooth causes it, I was only trying to rollback everything.

      Report
    • Posted

      Hi Jay, 

      Believe me you are not alone.   Just before I received a diagnosis I thought I was terminally ill and had not long to live, I felt that bad.  I managed to go into a recovery state with odd days of not feeling good until 2013, when I had a major relapse after having then the condition for 5 years, and being able to work with it.

      I now too can't work more than about 10 minutes, my body feels like it has been run over by a steam roller, my joints crack and ache.  The pain can be really bad.  I take pregablin and make sure a hot water bottle is nearby at worse times.

      As we all say, do not push yourself.  Listen to your body rest when you need too.  Little steps (tasks), and then rest 30 minutes or so, and if you feel exhausted after 1 or 2 tasks then do no more.  Give your body and mind to adjust to what is happening it could be months or as some of us know much longer.  The main thing is to stay as positive as possible and remember you are not alone.

      Wishing you all the best.

      Tx

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up