Possibly have CFS.
Posted , 5 users are following.
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.
1 like, 27 replies
jackie00198 tracy_40507
Posted
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.
tracy_40507 jackie00198
Posted
I do appreciate your comment. And will keep in mind what you have said.
tracy_40507
Posted
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.
Beverley_01 tracy_40507
Posted
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
janet71271 tracy_40507
Posted
I wrote a response earlier then battery went before finished.
Was saying sounds much like what happened to me. I tried three times to return to work. In my case I had to take place health retirement in the end after a year off sick.
Try not to think about work right now. Unfortunately you will have to go with it and not force yourself. Be at home and take things steady.
Good luck with all your tests. Excellent to have found a Dr who is listening to you. Makes all the difference doesn't it. Take care x
janet71271 Beverley_01
Posted
I know someone else who goes to the seacoft clinic. X
tracy_40507 Beverley_01
Posted
Hi Beverley
Thank you for your reply. I have just got back home from taking my sick note to the universal credit office. Hopefully I will get some financial help as sick pay is just not enough to live on. I don't live with the my partner so the bills need paying. I just hope that if it comes to me lossing my job because of this illness that I qualify for help. I have a contract until the end of January as it is a new job! I think we have a clinic in York that helps people with the illness so I can ask to be referred there, but thank you for your advice about that. I will look at the M.E association and join once I know that I definitely have the condition. Once again thank you for your advice. 😁
Beverley_01 janet71271
Posted
janet71271 tracy_40507
Posted
Just the journey alone to leeds from York and back must be exhausting enough X
when i was working I was travelling into central London from where i lived near Heathrow. As my health declined it was like pure torture just travelling on a train then bus to where I worked.
I moved back up to Yorkshire nearly four years ago. Haven't even got over that ! X
Beverley_01 tracy_40507
Posted
Hi Tracy,
Ah, I guess you commuted to work from there, presummed you lived Leeds area.
Yes York should have a clinic too. Also, the ME association has a booklet to help to apply for PIP benefit. I'm not sure of the time periods for SSP but, if you are unable to work you can apply for ESA once SSP comes to an end.
Beverley
tracy_40507 Beverley_01
Posted
tracy_40507 janet71271
Posted
Hi Janet yes it has made me much happier with the doctor listening. I just don't understand how you can feel ok and start pottering about at home then go back to work and feel so horrific. The drive really did take it out of me my fella doesn't understand why work takes its toll on me so badly. I live in York so not far from you at all.