Hey guys, things have gotten pretty bad here at my house. On Friday, I woke up in so much pain and exhaustion that I couldn't even work from home. I ended up sleeping for 18 hours. Saturday was a little better, but Sunday, I was in serious pain and was very exhausted. On a scale of 1 to 10, my pain was at an eight or nine with medication. And on a scale of 1 to 10 my exhaustion level was at a 16. On Monday, when I woke up, I couldn't move. My husband wanted to take me to hospital, but I told him it wasn't necessary. I didn't think it was a medical emergency. The problem was was that I was in too much pain to convince my body to move. I would try to tell my arm to move and another part of my brain wouldn't let it happen. It was scary. So my husband gave me some pain meds, and in a couple of hours I could move. I slept for another 18 hours. On Tuesday, I still hurt and was still exhausted. I slept for another 18 hours. And today being Wednesday, so far I have slept for 12 hours but it is only noon. I am really frightened that I am getting worse. It seems that my ability to do my job, do chores around the house, take care of myself, etcetera is decreasing every few months. I don't know what to do. I'm going to go see the doctor tomorrow, but I know that he will just shrug and not have any idea how to help. I am frightened that I won't be able to work and I will lose my job. I'm not sure how we're going to make it if I end up sicker, and I don't provide money to our household. I know I'm worrying about the what ifs, but the what ifs seem to be looming large, suddenly. I could use any support you guys can give.
Hi Ravenwood,
Sounds a really scary few days you've had. Just wondering if there was any extra things that you were doing last week? Something that may have overloaded your system? It may not have been something you'd consider that major. Also, not sure where you are based but, there's quite a nasty virus going around and they seem to hit much nastier when you have cfs/me. Its hard not to panic when things seem to shift so quickly but, try not to focus on the what ifs and do all the things that you usually do at bad times to care for you. I just had a couple of painful and exhausted days though not as scary as you just had. I also know that scary feeling of maybe I'm getting worse. Its not nice at all. I know Its easier said than done but, just let this bad period pass, tell the doctor all the symptoms as best you can and allow your self healing time. Remember it may be that you have been ill. I know I often can't tell.
Hope this helps
Best wishes
B
Hi Ravenwood. It is incredibly weird, but i have had exactly the same stuff going on as you, since last Thursday!! I am no drama queen, but I thought i was going to die yesterday. I had to go to the Job Centre and almost passed out. I had two nasty people there, firing questions at me, when I was crying my eyes out and begging them to let me leave as i felt like I was going to pass out. They ignored me and carried on!!! Unbelievable. I actually did pass out when I got indoors. I've been incredibly frightened too, and live on my own. I have only felt a bit better in the last couple of hours. It seems that the pain has gone as quickly as it came. I truly hope you are feeling somewhat better now?
I wonder if anyone else has been extraordinarily ill and in pain with their M.E. too? Isn't it weird.
I can't work and I just about scrape by on the money I get from ESA benefit (£100 per week). I have DWP on my back constantly and I am incredibly scared. If I don't get accepted into the Support Group of ESA Benefit soon, I really can't see myself going on at all. Sorry, I don't mean to be doomy and gloomy, but I am a realist.
If you can't work, you have to accept it, but I truly wish you well and hope you feel a bit better by now? A couple of hours ago, I was on the floor, doubled up in pain. I seriously thought of dialling 999. Then all of a sudden, I felt a bit better, and able to sit at my PC for a couple of minutes!!!!! It is the weirdest illness isn't it.
Do what you have to do, and put your health first, or you might push yourself too far and feel worse? I don't believe in telling people to stop working, but sometimes, something's got to give???
Take care, and I wish you all the best in whatever choice you make.
I hope you have a restful night. xx
Hi, Ravenwood. So sorry you're going through this. I noticed in your post that you mentioned doing chores around the house and also working. I know this may be hard for you to do, but I would advise you to cut back on both of these activities. Really, the best thing would be for you to stop working and doing chores for a while. I understand the financial consideration. So many people have posted who are in your situation, between a rock and a hard place. But if you push yourself too hard, you may not be physically able to anything for a long time. At that point, you won't have a choice. Your body will make the choice for you. This is what happened to me. I wish someone had told me what I'm telling you now. Could your family help pick up the slack, helping with chores and money issues? If you are in the UK, can you get financial help from some government entity? I find that usually when I'm scared, it's out of fear of what might happen. So I try, to the extent possible, to stay focused on the present moment. And I do know how difficult that can be when you're flooded with new, severe symptoms. Best of luck to you. Keep us posted on how you're doing.
hi Longtallsally. many ppl with ME/CFS find their symptoms exacerbate when the weather pressure changes, especially when it drops from a higher to a lower pressure. presently we're having a prolonged low pressure stint.
my already low B/P drops further @ these times and i frequently pass out if i don't get lying down in time. other times my legs just go and i slump to the floor wherever i am. pain also exacerbates ++ @ these times. u might also have a mild version of Pots. have a google.
re: the DWP: theres an on-line organisation called ''Work and Benefits'' who give invaluable advice on how to deal with the DWP. you have to be a member - costs £19 i think, but i'ts well worth it.
the other option is to get your MP involved. once i got onto my MP who wrote to the local council (housing) & the Welfare minister, the DWP backed off - or at least for the time being.
Caitlin
Hi Caitlin,
Found your comments about the low pressure interesting. Its not something I'd heard of before-an environmental element. Are you feeling "worse" at present?
B
Hi Beverley, I also feel the weather changes, anything with a drop in pressure in the weather does cause me to be worse.... i also get affected by thundery weather and while the presure is increasing i dont magically feel better straight away but over a couple of days will begin to feel that bit better and concentration improves
Hi Andrew,
This is really interesting to me as its not something I've been aware of. it adds something extra to take into account and observe. If I have the energy at the same time as the weather changes to do so, I'll try record it. I know i've been having a 'bad' phase for a few days but last week was busy (more social contact and travelling) so put it down to that. I know for lots of people with rheumatism that its affected by the weather. I feel I'd like to know more.
Thank you for this
B
I would liek to know why too! oddly - i have a brocken finger (healed ages ago.... hmmm) anyway it alsways aches when the weather is changing for the better or for the worse. Draw a graph of date and how you feel score out of 10 and then at the end of a week go back over the pressure record ad see what you felt like on what days, ideally you want three scores each day. or better still get someone to record the pressure of the day for you each morning afternoon and evening and send it to you to plot. i would be very interested in your results...
seporatly i have a heart issue or two and it responds to the weather differently.
I may well do this! Its certainly given me something to think about. I have kept a diary since roughly 3 months after symptoms began so, I have a kind of idea of how I've been. Just wondering, was your cfs/ me from a virus? It seems most people's on here is.
You say you have a couple of heart issues, is that pots? I've only recently joined the forum and found out about pots. I don't have it but, there seems a link for some people.
B
My ME/CFS seems to be from Glandualr fever when i was much younger and then set of by a series of chest infections and sinus problems... so yes a virus...
I have POTS, annoyingly, but the added extras are Prinzmetal Angina, brought on by stress at work and or Cardioversion of Intermittent Arrhythmia, itself brought on by Fit Heart Syndrome as my GP calls it and this is backed up by work by Prof Pearson and the Athletic Heart. - i was a very good sprinter from teenage to mid forties, and sub 4 hour marathon - base heart rate of high 30's to low 40's
How does that affect you and do you have medication with that? Do you have to lay down with the pots?I have cardiac arrhythmia that is positional which sounds odd but just means the rhythm can be knocked out of sink just because of how I'm stood,sat,walking etc. No meds and not related to the cfs.
So did cfs just hit you one day or a gradual thing?
Hi, Jackie. No, I live in the United States. If I go on disability, it will take a minimum of two years until I get approved. I can't imagine how I'm supposed to live for 2 years without any income. It's crazy. Today is Thursday, and I do feel a bit better. I only slept 14 hours. Yay! My pain levels are down as well. However, I still feel much worse then I did even a couple of weeks ago. I am hoping that by taking the rest of this week off, I might be able to go back to work on Monday. If I can't, I don't know what I will do. Thanks for your concern.
Just wanted you to know, when I worked, I went on disability (I think it was state disability, here in California) for 6 months, that was effectively immediately. After 6 months, I applied for Social Security disability. This was a while ago, but I know it didn't take 2 years. They initially rejected my application, which I was told they frequently do. I and my doctor sent a letter of appeal, and I was accepted. This maybe took a few months.
Hi Ravenwood,
Am glad you're feeling a bit better today and hopefully that, as you say, taking the rest of the week off helps. Sorry to hear it is such a long process if you become unable to work to get any financial support in America. I hope that it maybe that like Jackie, its not as long as this.
B
have meds for the heart..... and thyroxine stuff, Flecanide for Arrhythmia as pill in pocket, GTN spray, Tildiem twice daily, Nitrate for overnight........ Positional Arrhythmia is fun too - i can do that if i slouch watching tv.... so dont slouch (darn) otherwise it sets off in low demand times - overnight, sitting reading (not slouching) watching a film / tv and relaxed, and so on. The spasms usually at rest too.....and they really hurt!!!!!!!!!!!! Me came on first time quite quickly final starw came when i fell asleep driving one day and realised yup i couldnt ignore it any more luckily for me and others i went onto the grass verge.... over three years fought it off hadan ok 18 months but being a nit ambitious both at work and athletics i pushed too hard and slowly but surely it all came back and got worse and worse till now it is twice as bad as before and still going down. Trouble is i need to be active to help my heart (within sensible limit) but that is too active for my ME/CFS....... not found the balance yet. Its like walking down the middle of a busy road do too much and drift one way i get hit do too little and drift the other way i get hit by the other.... might be worth your while asking about pill in the pocket - flecanide, it does help!
Hi Andrew,
Its so hard not to over do things with this condition, well It is for me. Not knowing if it will hit you later. I totally get the walking in the middle of the road, although for me its pain I get one side, cfs the other not the heart issue. The arrhythmia in my case is manageable as I've learnt that if I make the figure of an upside down 'v' it usually goes. Harder to do in public though :-)
Before my cfs, I was a walker and I truly miss that. At first, I did do a 5 mile walk a few months in and the pain and pem was too much, so, not listening-I tried again a longer walk. I wasn't diagnosed yet so thought it was all due to recovering from the car accident and bang-agony and more pem stuff. It took me ages to build up to 15 mins swimming then half an hour but recently, have done no exercise. Its such a tough balancing act to manage. Have you been to cfs clinic? I bet they don't know how to approach things given your conflicting conditions.
B
hi beverley. ''positional cardiac arrythmia'' does sound odd. how does it affect you? do u know what causes it? is it treatable?
This all sounds very scary, indeed. Seeing your doctor and getting a FULL blood workup, if you haven't, is the place to start. Then move on to a specialist, once you have a diagnosis. I don't recall where you are in your health journey...if this is new for you, or old/worsening. Hope this helps, and best to you.
Remember, panic and anxiety, which is common for me (not to mention depression), worsen our physical state. So maybe try some mental calming exercises, or meditation, something that would help you.
Be persistent, and hopefully you'll get some answers.
Best,
Nan
Hi Ravenwood,
I don't have any advice, just sending you wishes for improvement and some flowers. Love, 🌸🌷🌻🌼🌹🍀