Hi, My doctor diagnosed me with fibromyalgia and chronic fatigue syndrome along with B12 and vitamin D deficiency about 7/8 years ago.
Does anyone else suddenly feel unwell and have an urgent need to lie down? I can be sat working at my desk or out in the car etc, but I feel really bad and have to lie down.
I just need to know whether anyone suffers with this? Is it fibromyalgia, cfs or something else? I'm on high blood pressure medication, so don't suffer low blood pressure but I am classed as morbidly obese, but do eat during the day, so not a sudden sugar drop.
I know that my doctor isn't interested in helping me, and I haven't changed my medication.
Thanks x
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Sleepy73
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Oooh sleepy, that's quite a list of conditions you have there my lovely! I don't know how you're ever upright! I find its hard to know what condition is actually causing which symptom 🤦🤷, I drive myself nuts thinking about it. I fight that fatigue feeling all blooming day. I'm watching the clock thinking when can I get away with going to bed for the night! I can't answer your question but I can understand. Sometimes a change of doctor can help. I've tried a few, both NHS and private. Don't give up, you deserve to feel better than you are X
Hi,it certainly could be cfs or fibromyalgia.I’ve had cfs for many years and Fibro for 5 years amongst other things. Sudden feelings of exhaustion and malaise have been common for me often with dizziness and I need to lie down. It usually happens when I’ve done too much……for me. Sorry your GP isn’t more helpful. Have you ever been to a clinic which help’s and assesses people with both cfs and fibromyalgia? You could ask your GP to refer you to one of these if there’s one in your area. Also have you had recent blood tests? There’s always a possibility you’re anaemic. Hope this helps a bit. Pacing is key in both these illnesses. Good luck 🦋
I’ve got fibromyalgia and CFS and I certainly get the feeling that I have to lie down or I’ll fall down. It’s horrible isn’t it. Don’t know which causes it and GP hasn’t a clue either.
Sorry to hear your struggling!! And yes most days I get drowsy and drained constantly trying not to over do things each day self management is the best way for me . It sounds like the doc is clutching at straws fms cfs and the long term affects of a B12 deficiency have the same or similar symptoms it's easier for docs to just give us these labels to get us out the door.
hi, if this is a new symptom for you then please do contact your GP just to be checked out. Maybe there is another GP at the practice who would be more understanding.
I do get the feeling of an immediate need to rest but it is usually when I am doing something, housework, shopping or whatever rather than when I am sat. I also need to nap daily to recharge, I get an overwhelming feeling that I need to lie down, which I appreciate is difficult when you are working. As someone has mentioned above pacing really is key.
Do you have injections for your low B12? I have one every 12 weeks and feel even more lethargic than usual for the last couple of weeks before the jab is due. If you aren’t getting regular treatment it may be worth having this checked again. Take care
I used to have the B12 injections, but was changed to tablets. I asked to stay on the injections but was told that I could still get the B12 with tablets. Yet when I asked for the research material I never received it and when I asked how it would work when I can't absorb B12 through my food, how it would work through a tablet. Again no response. I believe it was a cost cutting exercise yet again and that we as patients are being forgotten as they manage their business and budgets
Don’t feel you need to apologise about how you’re feeling, you are totally valid and we all empathise 💖
I too get so fatigued and feel so I’ll that I need to imminently lie down; there’s no rhyme to the fatigue for me as I could just be sitting at home and still need to lie down (tbh I feel extremely rough when I rest up, I find it quite scary).
I hope you can find something that helps alleviate your pain/fatigue a little and I also agree with pacing yourself xoxo
I have this when I'm in flare, I also have my b12 drop regularly, they boost with tablets but drops again, usually each autumn. I'm a teacher and regularly need to lie down on sofa in headteacher's office at lunch when I get that feeling. It's lie down or crash.
Yes. I get this happening sometimes and get right down on the floor (that is slump or sink down as gracefully as possible) put a cushion under my head if I can reach one and if my arm has enough strength to grab it of somewhere higher up. I can be like this for up to an hour but eventually 'can' get back up on to my knees and crawl to a chair, or go get some water or something. Kids need time out, so do all of us.
I feel it's just the general state of being that we live with and sometimes we've done too much in the days or hours leading up to it, yet alone dealing the degrees of bodily discomfort. Who knows! But some kind of recovery always reasserts itself, especially in response to demands of the bladder. Possibly, I'm worse after trying to keep going to get stuff done and using sugar as a means to do it but you are obviously well aware of that. D-Ribose is however a useful supplement to take (up to about 3 or 4pm only though) and about a year in from diagnosis, starting taking that, it gave me half my life back energy-wise. Not pain-wise though.
I'd say, as far as you can, do what the body that belongs to you alone, says, at the time and talk to yourself gently through these experiences which are indeed frustrating and horrible while they pull you down from their many causes and their unfathomable, irrational and unnecessary meanness that so many GP's obviously cannot even begin to understand!
I use self Reiki when I feel strong enough to move a hand but that is very much about gentleness, good intent and love towards yourself. Even rubbing two fingers together and focussing on that feeling will tell your body and brain bits you want it to rest and recover, so just love yourself.
I recently read how our ancestors who could put on weight were the ones who survived famines, so just remember that you are a survivor and can work it all out how it suits you. You will. You really will! x
Hi Sleepy I also have both Fibro and CFS - what you're explaining sounds like fibro-fog to me, and I do get the same sensations. I've found it tends to happen more when I've over-exerted myself, pushed myself to get things done or had to do something urgently, etc. You've probably heard it a thousand times, but do you practice pacing so that you don't get overwhelmed? It's boring, but it really does help
Have you checked your thyroid results as low B12 and D are often linked with that health problem, as well as being very fatigued and putting on weight?
I am very sorry that you are unwell and feel unsupported. I can assure you that all of us here have had experience of feeling unwell with an urgent need to lie down to rest. Generally speaking that is an extreme fatigue that can be related to many issues including all the ones.you have a diagnosis on. It is more important to find a solution. Have you repeated your labs to make sure the supplements you take normalised vitamin levels? Are you able to fit in some physical activity daily to get moving and blood circulation flowing? Since you don't have much trust in your doctor can you request to see another? It is really important that you are seen regularly by a doctor, to be assessed for medications adjustment based on symptoms and lab work. Those are the things that you do have control over and if you take actions, improvement will be very possible and happen soon. Take care of yourself.
yes I get this as a symptom of FMS/CFS. It feels like someone pulling the plug & the bath quickly draining! When it’s empty, I just have to go to bed get comfortable with my preferred pillows cushions blanket etc & I sleep 😴 (as well as I can throughout the pains/aches etc). It happens when I’m not trying to do anything as well. I might be watching TV,reading something & wham, someone has pulled the plug!
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I also have both Fibro and CFS - what you're explaining sounds like fibro-fog to me, and I do get the same sensations. I've found it tends to happen more when I've over-exerted myself, pushed myself to get things done or had to do something urgently, etc. You've probably heard it a thousand times, but do you practice pacing so that you don't get overwhelmed? It's boring, but it really does help
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My Appeal turned down
Urgent Request for a fibromyalgia specialist contact
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