Sudden severe exhaustion

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Sudden severe exhaustion

Postby exhausted » Sat Apr 22, 2017 11:41 am

HI.
Thanks for accepting me as a new member.
I was diagnosed between 25 and 30 years ago and since then have had pretty much every symptom of Fibro except one. The exhaustion. I have suffered from extreme tiredness of course but what I've had over the last 6 months or so is nothing like that and I would really like to know if what I've been experiencing matches what others mean when they talk about sudden extreme exhaustion.
Yesterday , for the first time in 3 years I went out. I drove one hour to visit my son, stayed for 3 hours then drove an hour back. As we got close to home I started to feel tired, just ordinary tiredness with pain in my back- nothing strange. BUt when I got in it suddenly felt as if I'd been hit by a ton of bricks. I started to tremble and shake, my chest felt heavy and I knew if I didn't lie down immediately I would collapse. It was very scary, especially the shaking and trembling and happened all within about 3 minutes. I lay down and was asleep within 90 seconds. I couldn't even have got upstairs. I slept for about an hour but even then it hadn't completely gone and took another 5 hours to come round properly. I felt so weak and my legs felt like lead weights.
Is this the same as when people describe the Fibro exhaustion?

I saw my GP about it several weeks ago and he did dozens of blood tests and chest x rays. The only thing that showed up was a complete lack of Vitamin D. MY levels were so low they couldn't be recorded at all so I am now on strong supplements. Does this sound like the Fibro exhaustion or do I need him to be looking further?
Many thanks in advance for replies.
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Re: Sudden severe exhaustion

Postby *Lisa* » Sat Apr 22, 2017 5:29 pm

:welcome:

It sounds like your GP has been thorough. If in doubt I would go back as you know your own body and know when something is not right.

Saying that I do have extreme severe fatigue episodes where it feels like my whole body shuts down. I cannot speak, my body is heavy and need to go straight to bed.

If you hadnt been out for so long maybe you over done things as driving takes up alot of concentration and then 3 hours of talking and concentrating with your son. All mental fatigue, doesnt just have to be physical.

I hope the Vit D tablets will help you, the deficiancy maybe contributing to symptoms.
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Re: Sudden severe exhaustion

Postby exhausted » Sun Apr 23, 2017 9:36 pm

Many thanks LIsa
I've heard people talk about the exhaustion hundreds of times over the years but it's not something I've ever experienced and it scares me to death when it happens. When people said they were exhausted i Just imagined extreme tiredness but not something like this so I wondered whether that was indeed what people meant by the Fibro exhaustion.
Sudden shaking and a complete shutdown.
I had a mild attack again yesterday which felt as if I hadn't been breathing properly; shallow breaths and bent over sewing when i suddenly got severe pain in my spine, started trembling and felt as if I would faint. I did some exercises to loosen my back muscles and used an inhaler and gradually it eased off but the other times I just had to lie down and was asleep in seconds.
It's just the one symptom I've never ever had.
My GP has indeed been very thorough; checked every organ, vitamin levels and every cancer he could test for rather than just assuming it was part and parcel of pre existing conditions. I also have herniated discs, T12 syndrome ( trapped nerves at T12 /L1); various neuralgias, subacromial impingement syndrome, Sjogrens syndrome, abdominal adhesions,arthritis, chronic urticaria and angioedema, thyroid nodules Fibro and was at one time suspected to have Lyme because i had the rash but was thankfully negative. So it is difficult for him to say what's causing it and he's fishing in the dark.
I can cope with all the other strange things that Fibro does and the pain but this is different and uncontrollable.
Yes I probably did too much although a short trip doesn't seem that much. I wouldn't have thought twice about it 3 years ago. Fibro has been the least of my problems but if this IS Fibro- I don't want it. It's scary LOL.
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Re: Sudden severe exhaustion

Postby *Lisa* » Sun Apr 23, 2017 11:32 pm

Wow you sound like me :shock: I also have chronic urticaria and angioedema, had it for over 5 years and currently under Addenbrookes specialist team. I was seeing a general skin specialist then he saw a blood test i was positive in which GP over looked (P-ANCA) so off i went to see an Immunologist/Allergist at Addenbrookes, she tested for allergies and took my history. I was only allergic to grass pollen so no significance and then went onto a consultant Rheumi who specialises in auto-immune disorders & connective tissue diseasea/vasculitas etc as they feel possible link to an Auto-immune disorder but not come up with anything just yet as Im not significantly syptomatic of any particular disease (yet) so am going back next month for review and no doubt more bloods!!!

I also have been in and out the MRI machine past few weeks as I also have herniated discs, mine are S1 (left side) & L4/L5 right side. The S1 is causing alot of Neurological symptoms aswell because the prolapse is popping out the back into the spinal canal compressing all the nerves and am waiting to see the Orthapedics Team for treatment as may need surgery :shock:

I also have facet joint arthritis, curved spine, sponylitis (DDD) and so forth :roll:

I find the Fibro to be the agrivating factor in all of this as the stiffness really does excasabate it all.

Im no doctor but could your herniation at that level compress and agrivate the spine/nerves around your ribs/chest? as this may cause chest symptoms, just a thought. When was the last time they MRI/X-ray your back?
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Re: Sudden severe exhaustion

Postby Bobby16 » Mon Apr 24, 2017 10:52 pm

Can I say for the past 4 years I've been telling doctors of the severe pain in my spine between my shoulder blades. It burst into my chest. Now I feel like I'm having a massive heart attack most days. My heart is ok. I to have spondylitis of the neck and a bulging disc there to. They can't opporate on that because the facet joint are so bad. My point is ive had aching shoulders and neck since I was 18. I'm 52 now. My GP new that I had spondylosis in my neck but never mentioned it to me. It was only when I went for a new job. I went for assessment at occy health. They said how does the spondylitis in your neck affect you. I said, what are you talking about. They told me that the GP had told them. They should have told me. They should have sent me for earlier scans. Then they might have been able to help and fix the disc before things got bad. Now I'm thinking is it a disc in my spine causing unbearable pain. When this pain occurs I want to die on the spot. It's intolerable. If it is a disc and someone can help why haven't the doctors help me. I'm going to make an appointment to see my GP and demand he gets to the bottom of it. I'm thinking it might not be fibro causing this pain .
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Re: Sudden severe exhaustion

Postby *Lisa* » Tue Apr 25, 2017 1:16 pm

I would go back to your GP and definatly have a chat. They may even send you back for x-ray / MRI.
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Re: Sudden severe exhaustion

Postby Bobby16 » Thu Apr 27, 2017 10:01 pm

Thanks Lisa. I'm plucking up the courage to tell the GP. I don't want to break down. I'm thinking of going to seek advice on an advanced directive. I don't want to be brought back to this . It's a nightmere.
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Re: Sudden severe exhaustion

Postby Bobby16 » Thu Apr 27, 2017 10:07 pm

Nightmare
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Re: Sudden severe exhaustion

Postby exhausted » Sat Apr 29, 2017 12:51 am

Well that went off the question somewhat. Any advice on the sudden exhaustion please.

As others have mentioned I too get the pain through from back into chest but that's costochondritis and an anti inflammatory rub gets rid ofthat. I've had about 6 MRIs but now have problems with the magnetic field. I thought it was panic making me feel as if I was burning up from the feet upwards but the nurses couldn't find any signs of panic and decided I react badly to the magnetic field so another MRI is not an option. Chest x rays showed degenerative changes in my lungs, probably the start of COPD but that doesn't tie in with the exhaustion. that hits me within seconds without warning. IT's like a ton of bricks landing on me. I start to shake and tremble and if I don't lie down I would collapse. Is that how it affects other people so suddenly and severely?

The urticaria/angioedema has really calmed down over the last few years. THe immunologist didn't take it any further once he'd diagnosed it. Now i Just don't go anywhere without anti histamines and steroids. It mainly affects me in the middle of the night. I wake up with my eyes swollen shut, skin full of fluid and then my lips start to swell. IT can take a couple of days forthe swelling to go down. I don't like taking the anti histamines because the react with my oxycodone and make me drowsy but needs must. I have two herniated discs in my neck which affect my arms. My hands often loose feeling and get worse when my shoulder is bad- basically the tendons are shredded.
The main pain is from the mid spine, Thoraco lumbar junction where a nerve is trapped just over the back of my hip. that causes abdominal and leg pain. I also have severe abdominal adhesions and pudendal neuralgia caused by the trapped T12 nerve. Oh and I have sjogrens syndrome So you can see, Fibro is the least of my worries. I've had that so long now I almost forget abut it which is why this sudden exhaustion has scared me. I get all the other symptoms like fibro fog, poor sleep, dry skin, costochondriis, memory loss , extreme sensitivity to many drugs and aromas, perfumes etc and I have lots of allergies but never before this exhaustion. Help please. I just need to know if this is "normal" with Fibro.
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Re: Sudden severe exhaustion

Postby LindyM66 » Sat Apr 29, 2017 7:10 am

The exhaustion, for me, can come on out of nowhere. It's like hitting a brick wall. My body feels like it's made of concrete, and all I can think of is sleep. I can't "push through" it ( I hate that phrase with a passion).
I've been off work for the last 2 weeks due to a flare, and will be extending that sick note for another 2. This is the worst flare I've had since I first became unwell last year. It just doesn't seem to want to b*gger off!
GP thinks it MAY be MS and not FM, so once I get seen by a neurologist ( which I've been advised could be another 3 month wait), I may have a better idea of what's happening.

Much Love
Lindy x
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Re: Sudden severe exhaustion

Postby Bobby16 » Mon May 01, 2017 8:27 pm

Sorry exhausted. Was having a very bad day. Any solicitors about .Exhausted, I'm to tired to stand some days. I'm sure not everyone has this.
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Re: Sudden severe exhaustion

Postby exhausted » Sat May 06, 2017 7:54 pm

Thanks LindyM66. That's what it feels like. My GP seems now to be ignoring it once he's done he blood tests and ruled out anything sinister. I've been waiting to see a neurologist since a referral last July; still no closer to an appointment. They've already cancelled three.
Sorry BObby 16, didn't mean to sound snappy but the way this exhaustion starts out of the blue has really scared me. It happened again last night while I was having some supper and I couldn't even get upstairs to bed.
I know what a flare up is like; I'm having one today but that's with adhesions not the fibro. What gets me is why the flares start when you haven't done anything unusual. I knew I'd have one last week because I went to the opticians and sitting so long in the chair was agony. JUst got over that and the adhesions start up. I'm sick of it.
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Re: Sudden severe exhaustion

Postby Bobby16 » Sun May 28, 2017 10:23 pm

I feel I've been badly managed. I've listened to Doctor's and consultant's and just accepting what they say. Yes, you've been medically trained . Yes I accept what your saying. Yes, im so fatigued​ that sometimes there is no energy in my muscles to even lift a finger. Yes, I fall sometimes. Yes,I have balance problems. Yes, I have memory problems. Yes, I have visual problems. Yes I can't do what I want to do. Yes, it has socially restricted me, severely. Yes, functioning is difficult. I'm a yes person, can you tell. Don't be a yes person like me. Don't have Doctors hearing but not listening to you. Don't let them look straight through you and be lazy, yes very lazy to do something.
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