I have had a doctor tell me that I could possibly have CFS , I have been ill since having Pluresy and a couple of weeks ago I really went down hill. Absolutely shattered and ache everywhere I have got stabbing pains in my arms and legs. I feel like I can't breath properly and sound breathless when speaking. I now and again get a ringing noise in my ears and can hear the blood pumping in my head. I feel like I am struggling to put words together sometimes and cannot concentrate to read ECT. Sorry to moan, I have noticed that at the moment I feel a little bit better but still shattered after doing the smallest thing I feel.that I can't go to work lunch this I don't feel like I can drive that far and that I will definitely not be anlevto do a full day. If after washing the bath out I feel like I need to rest for a hour . I understand that i have a long way to go before I have a full answer but am supposed to be going on a holiday of a lifetime in September (on a cruise) my partner thinks we should cancel and i dont want to , I know it will be a different kind of holiday but feel it .aye do us both the world of good.
There are criteria for a CFS diagnosis. If your doctor has ruled out everything else through whatever tests they are able to do and your symptoms fit with the criteria then you should try to get diagnosed.
If your doctor has tested for other illnesses, infections etc then look on the internet for CFS diagnosis criteria. If you then feel you fit you will want to as much research as you can regarding things that help CFS.
I'm sure many of us have cancelled holidays etc in the past. It just the way of the illness. Doing anything physical or mental will cause your very small energy bubble to deplete increasing your symptoms and getting PEM (Post Exertional Malaise). PEM is something you should definitely look up. If you manage yourself well though holidays are possible. The key thing to remember is pushing yourself makes you worse with CFS.
Hi Tracy,
I get many of your symptoms and can understand how hard it is for you as if it is cfs/me you are in the early stages and it's all a bit of a shock.
Going back to work may need to go on hold right now as it sounds out of your grasp and if/when you do go back it will need to be done very gradually.
The key to recovery is resting and doing things in small amounts as well as eating as well as you can. I don't get the breathlessness so much but someone i know who also has cfs/me does and it can be scary but, again, good amounts of rest will help. Pleuresy is a very physically draining condition and your body will need time to recover and the current weather may not help with that.
Be gentle on yourself and ask others for as much help as you can. I find that bit hard but essential.
Regards your holiday, if you do go, make sure you're prepared. Do as little as you can before you go. Get your husband to pack. Rest on the journey there and back and take ear plugs and sunglasses. Cutting down on as much over stimulation as possible before, during and after your holiday will help. When I've been away i have always had to plan some recovery time when i come back. My walking is badly affected so that stops me doing too much as i have to sit down and have to rest. Yours maybe that your breathing acts as the same deterrent to doing too much.
Hope that helps
Beverley
Hi Tracey
Sorry you are so unwell. No fun I well know. Am I understanding correctly that you have only been unwell a few weeks ? Rather than months ? If so it is far too early to say you have CFS. You more likely have a post infection fatigue which has the possibility to resolve itself. And not develop into a chronic state.
To diagnose CFS the symptoms should have been present continually for at least six months. Plus a string of other conditions and diseases have to be ruled out first. It is a process and diagnosis of elimination.
The best thing for you to do right now is to allow your body to heal after your recent infection. Pleurisy is not pleasant and can take a toll on your body. such things shoot down your immune system and can make you feel unwell for a time afterwards. Don't push yourself to do things. Rest as much as you can but don't completely do nothing . just take it gently. Eat a healthy regular diet avoiding junk food and processed food as it does not help boost your immune system and thus the healing process. Drink plenty of water. Especially in hot weather. There's a whole variety of nutritional stuff people follow etc. What does for one does nothing for another.
I know your symptoms are concerning and frustrating , but being careful and kind to yourself at this stage can make all the difference to the outcome . not everyone who has a post viral/other infection fatigue goes on to have chronic fatigue syndrome. relax and take it steady and be positive. Hope you feel better before too long . take care x
And definitely don't go back to work yet. Very important you have more time off to recover. X
Thank you do much for the lovely and helpful comments. I had Pluresy in March and have had lots of tests that ate all coming back as normal, I am having a C.T scan soon as I have a constant pain in my left side since having Pluresy. My doctor is completely baffled. My husband sent me to a private doctor who came up with possible CFS as she was also completely baffled.
I have a very healthy diet and am following slimming world although I am not as strict with myself as I was previously.
Once again thank you for your comments and help. I completely understand that it may not be CFS so will keep a open and positive attitude. 😁
A pleasure to try to help. I have had ME for 22 yrs. Is moderate to severe And started with shingles three months ago. Still having issues with that .
Is the best at to be positive. Was early for the Dr to suggest CFS though. I hope you can get some answers. X
I have been told that I had shingles it wasn't that, then bowel infections or was not that. Had tests for thyroid problems and celiac problems also glandular fever. Nothing showing up. I just want to get back to work and hopefully stop hurting so much and feeling so wiped out.
Which I am sure everyone with a horrible debilitating condition does.
Thank you for your advice and I hope you feel better soon from the shingles.
Thank you Beverley. I hope that I get some answers soon as I am sure you are aware it is very frustrating when we are normally fit and well just getting on with our lives.
I hope you start to feel a bit better and thank you again for your time.
Thank you Bob that is very helpful I will look into the condiions you suggest.
Tracy--I'm going to come down strongly on the side of your partner thinking you should cancel, because of my own experience. First, I'm so sorry you're dealing with this, and yes, it does sound like you have ME/CFS. Especially since you have the classic red flag--post-exertional malaise (PEM). Shortly after I became ill, many years ago, I was actually starting to feel a bit better. So I thought, "I'm going to go on a holiday to San Francisco. I deserve it. It will do me a world of good, because I've been so sick and limited in my activities." So my husband and I went. And I became so ill I thought I was going to die. I had a complete relapse with symptoms that were way worse than previously. This is such a nasty disease, and if you are not careful, it will make you more ill than you ever thought possible. Looking back, if only my doctor--who was a very well-informed specialist--had just warned me to take it easy and pace myself, I might not be where I am today, which is almost 100% housebound. With ME/CFS, it's baby steps, and doing less than you think you can. My second bad relapse occurred shortly after I went on an Alaskan cruise. I wish you the best. You can get better, but take it very easy. In the long run, that is, I think, the best strategy.
Jackie thank you for your comments and advice the cruise is in September so we do still have time. I am trying to be very positive about the future and not let what it could hold for us, get me down. I am feeling very overwhelmed with everything at the moment and definitely not prepared to loose the money we have paid for this holiday .
I do appreciate your comment. And will keep in mind what you have said.
Hi Tracy,
It is such a frustrating condition but, on the plus it's very early days and is more likely post viral fatigue which is more likely to clear up. After 6 months it's seen as cfs/me.
Taking it easy now will help you.
Beverley
You know when you have shingles . it is horrendous . did you have severe nerve pain ,burning and. Rash ,? I had it before about ten years ago and was bad enough but this time very much worse. Plus it really exacerbated the ME .
That is the problem with ME/CFS. Other conditions and diseases have to eliminated first as do many have the same /similar symptoms. As I said before , at this state it is vital you take things really easy . I carried on working for months not realising how unwell I was as nurse. Well I always will be a nurse just not practising anymore ! One day I was just about collapsed in the office. A colleague thought I was dead as I was motionless on a sofa. She was about to go on sick leave with breast cancer. She looked and felt really well. I was completely the opposite. She even used to say she was glad she had cancer and not what was ever wrong with me .As at least she new there was treatment ahead. I tried to return to work three times but it was impossible. I had to give in in the end. I was off sick for a full year but no better . i was forced to take ill health retirement in my late 30s . Because i carried on working etc is very likely why I am still so unwell after all these years. 100%housebound . so it would be wise for you to take things very steady at this stage. That includes taking time off work. X
Hi Janet
I knew I didn't have shingles I just think the doctors do not have a clue what is wrong with me. I have started to feel a little bit better and am able to potter around the house but feel exhausted if I do too much ( which is nothing to what I would have done before March)
I am at the doctors tomorrow and will talk about a phased return to work and see what happens. I have just started a new job in April south is very difficult luckily they know means know that this is not normal. Thank you again for your help.😁x
Hi Tracey
I really wouldn't rush back to any kind of work. I know it is hard having just started a new job,. But your health is everything. If you are not well you will have difficulty doing your job. And pushing too far could result in exacerbating all your symptoms . Could result in not being able to do your job at all. And aside from your job, you need to consider other factors. Getting up and getting ready to go. Getting there , however you travel expends a lot of physical and mental energy. Once there , interacting with other people . then the journey home. So even if you think you could do a few hours at work, you need to remember all these other factors.
You are only just starting to feel a bit better so just go with that for now . take each day as it comes. You could well feel dreadful tomorrow and for no apparent reason.. Is of course up to you , but personally I would remain off sick for the time being. I learnt the hard way! And look how I ended up. Take care x
Hi Janet I went back to the doctor and she has given me a sick note for a month. God so frustrated I have tried to do some normal things and am shattered afterwards. Spent the afternoon in bed after a couple of days pottering around the house and walking my little dog.
I have to drive for half an hour to get to work and have a job where I am on the phone and talking to people all day, I really don't think I can do it. So frustrated as I have started to look a bit better so was hoping that I was improving. Will just have to listen to my body. Thank you for your reply.x
Hi Tracey
You have done the right thing staying off work. It isn't as if you would be sat quietly all day. Talking for even short periods is exhausting. Don't be frustrated about how you might look. A major ME thing is that many people look fine . which is misleading because the realty is far from it. It provokes people to say things like well you look okc. Or you don't ill. Good response is well you don't look clueless!
Do indeed listen to your body. Just take things gently ..try not to overdo it on days you feel even slightly less wiped out. Take care x
Hi everyone i thought that i would put up a post how I was getting on.
So after been off work for 7 weeks I made the decision with my doctor to try a phased return to work, my employer took on board everything and I went back to work. That turned out to be a big mistake, I did 4 hours ( around 5 with the drive to the office near Leeds) so 4 hours at work then a day off then 4 hours and the weekend off. I felt absolutely terrible after my first day and wiped out the next day, the second day wiped out the weekend. So the long and short of it is that after discussions with my employer I have had to go back on the sick. I ache everywhere and have stabbing pains in my arms and legs, fatigue is constant. Heavy arms so I feel that I cannot hold a hair dryer for any length of time ( so leave my hair to dry naturally) IBS symptoms, heart palpitations, ringing in my ears. Walking for any length of time is an issue, sleep problems waking up between 5 and 7 every morning and can't get back to sleep even though I am then shattered. Waking up lots through the night.
I have talked to a different doctor and today I am going for extensive blood tests even testing me for HIV. My recent C.T scan showed up a broken rib so that explains the pain in my side since having Pluresy. Everything else is normal. On the 5th September I am having a Gastroscopy examination ( endoscopy) as I have suffered from reflux acid for over 10 years now. This new doctor with a fresh start has suggested that if everything comes back normal from the blood tests we should look at the possibility of CFS/ Fibromyalgia. I feel like someone has listened to me and not thinking I am a hypicondiact making up what is happening to me. I am now resting and pacing myself through the day. Trying not to slip into depression as tears are never far away. This is so hard for my partner to understand and some of my family and friends as most days I look ok... wish I felt it.
So there we go another post and maybe some help on the way.
Hi Tracy,
Good news re: new doctor and if everything comes back ok blood wise and cfs/me/fibro is decided, ask to be referred to the cfs/me clinic based in Seacroft near Leeds. They can give you an info pack for family and friends there as well as help with other cfs/me questions etc. Ask to be referred as soon as you get your blood results as they need a normal blood result to accept you and there's a waiting list. Only saying from experience as i missed the deadline on the blood test result and had to be tested again.
To be blunt-Family and friends don't get it because they have never had anything this awful. There are a few articles written, on the web, by people who have it and it may help to get family to read some other people's accounts. Or look at the ME association online. I'm a member and its cheap to join and this gives you a wealth of info-again which you can give to family and friends.
Don't see the phased return as a failure-see it as an experiment that didn't work this time. I truly wish I could be back working in the job I loved and still get a little tearful sometimes. Recovery is your priority and asking for help is a part of that. It's a big thing to accept and if like me and thousands of others you were active and very independent before all this, doubly difficult. Remember that you did nothing to ask for this condition. It strikes people from all different cultures, backgrounds etc and you are not alone. Also remember people do recover but it can take time.
Beverley