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ME / CFS / Fibro spoony thread

(135 Posts)
notsurewhatshappening Sat 02-Mar-19 19:13:54

Safe space here for support and understanding- all welcome. I'm quite new to this so would be nice to chat (low energy levels permitting!).

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KingHenrysCodpiece Sat 02-Mar-19 20:40:40

I was going to post my own thread I have fibro diagnosed nearly 2 years ago. Up until now i've not taken any prescription drugs but I feel so ill now that I feel I have no choice. Yesterday I was in so much pain I had to phone the doctor emergency. I was crying down the phone. He prescribed me Pregabalin but they made a mistake and did not send it to my pharmacy because its a "controlled drug" but receptionist wrongly told me they would send it to the pharmacist. I couldn't walk anywhere so my mum went to collect it only to be told it wasnt there. Rang the surgery again but they were closing and mum couldnt get there in time.

I've been tearful and feeling sick all day.

KingHenrysCodpiece Sat 02-Mar-19 20:45:49

God that sounds so self-absorbed. I hate what it does to me. OP thanks for starting the thread. I imagine it must be both a relief to be diagnosed and anxiety provoking at the wrong time. Is it M.E. CFS or Fibro? Though some say it's all the same thing.

Whatcouldpossiblygowrong Sat 02-Mar-19 20:57:09

Hi!
I don’t have a diagnosis but am currently wading through the “whats wrong with me could it be cfs” maze.
I’m constantly exhausted. I feel out of it/ wiped out as you’d feel from being up all night or on the edge of being really ill or having just recovered from flu.
My neck glands are permanently up and my throat is always sore. Recently my knees hurt with no apparent cause -burning feeling.
Some people I spoke to suggest it’s cfs others said auto immune- others told me get your tonsils out- as I’m prone to that... not sure!

As background- I got glandular fever right in the middle of going through a v stressful separation - we are now back together- that’s when this all started about 2.5 yrs ago. Since then- have multiple colds and viruses a month and this background tiredness . I would adore to feel even half the energy I used to have. Any advice welcomed.
My go took the annual bloods and they r de back Wednesday.

KingHenrysCodpiece Sat 02-Mar-19 21:18:07

Hi Whatcould

Sorry to hear you're feeling so unwell. Glandular fever can be a trigger. Have you told your doctor that you are still experiencing swollen glands etc.

My throat always hurts but I never had glandular fever. It feels like having the flu all the time.

Whatcouldpossiblygowrong Sat 02-Mar-19 21:39:50

Yes- I spoke to my dr - finally went back as bit fed up feeling so exhausted. That’s why they have repeated bloods - they did them last year and my kidney function was terrible and full blood count low but everything else was ok.
Can’t say I feel like fly all the time- more run down but super tired. My legs and knees ache, glands are up, throat is sore and my eyes often sting. I swing from- “maybe everyone in ther 30’s feels this and I’m a wimp- I’m being ridiculous to try and feel more energised whilst being a working mum” to- “actually I’m sure this isn’t right I feel bloody dreadful”. It seems to come in cycles

KingHenrysCodpiece Sat 02-Mar-19 22:09:17

My legs and knees ache, glands are up, throat is sore and my eyes often sting. I swing from- “maybe everyone in ther 30’s feels this and I’m a wimp- I’m being ridiculous to try and feel more energised whilst being a working mum” to- “actually I’m sure this isn’t right I feel bloody dreadful”. It seems to come in cycles

Oh god yes, I understand this so much!

I spent years in that cycle. Going around in circles maybe it's normal, maybe im going through pre-menopause im late 30s, maybe i'm just stressed, maybe it's my anxiety, maybe it's my allergies, maybe It's some form of hepatitis, maybe its in my mind to finally what the hell is wrong with me?! Loads and loads of doctors visits blood tests keep coming back great. Each time I would get this look of annoyance from the doctor like i'm wasting their time.

Then one day I had an almighty flare that's when finally finally i got diagnosed. Its horrible to feel lihe you are going mad!

I do also have underactive thyroid which is associated with fibro. And im certain its pat of the problem. But even with treatment for that I often feel crap. Might be worth checking your thyroid out.

Whatcouldpossiblygowrong Sat 02-Mar-19 23:01:51

Oh my goodness. Thank you for sharing your story I feel so much better just knowing I am not going mad/ it’s not all in my head. I don’t mean that in a bad way-obviously super awful for you and I am sorry you suffer like that

MsLucyLastic Sat 02-Mar-19 23:06:56

Hi, may I join in please? Had fibro/CFS since a bout of glandular fever when I was 19. Am now 42 and it got so much worse after the birth of DD 8 years ago.

I was interested in what King said about an underactive thyroid. My gut instinct says my thyroid is underactive but blood tests come back ok. Is it worth getting checked privately does anyone know?

MsLucyLastic Sat 02-Mar-19 23:08:02

What - how you described feeling is exactly how I have felt for the past 8 years. Its not you going mad. Its an illness flowers

notsurewhatshappening Sun 03-Mar-19 07:35:56

Hello everyone and thanks for joining. Just woke up from 13 hours' sleep feeling like I've been run over. The morning stiffness is a classic symptom apparently.

I think tiredness / exhaustion is a grey area as life is so busy especially as a mum, with work, relationships etc that it takes courage to say no, actually this is not right and it's not normal to feel this way. Yes, everyone is tired and modern life is exhausting but illness is different to that.

I'm struggling with being signed off work at the moment. I'm a teacher and really miss my class and lovely colleagues. I desperately want to go back but it would be madness at the moment. Just getting my kids to school and looking after myself during the day is all I can manage.

Today I'm planing to spend my spoons on making a Harry Potter wand with eldest, doing one load of washing and watching a film with DCS.

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Whatcouldpossiblygowrong Sun 03-Mar-19 08:14:02

Aw that sounds like a Lovely day. I don’t feel too bad to be honest considering was woken up at 6am. Knees are very achey and sore but glands and throat not too sore.
My niece and nephew are coming today and I suspect they’ll be high energy so it will be a good test today to see how I feel when I try to engage

notsurewhatshappening Sun 03-Mar-19 10:23:31

Good luck with your niece and nephew Whatcouldpossiblygowrong . My DCS have decided to have a 12 hour lego building challenge today which su it's me fine. I've cleaned out the pets and had a shower. Now reclining with a cup of tea in DH 's cosy pyjamas watching the storm blowing outside.

I've found since being ill that my DCS donto really need or want big energetic days out mostly. They are real home lovers and are happy pottering round doing arty things / playing schools / pottering in the garden (obviously weather dependent). I used to exhaust myself taking them to theme parks etc but now I can't do that, they are happier doing low key stuff.

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KingHenrysCodpiece Sun 03-Mar-19 10:46:48

My niece and nephew are coming today

Ah hope you have a lovely daysmile I can't handle my nephew or neices its too much for me. Saying that right there makes me feel like a bitch. My sister babysat both my boys when they were young. But I can't take the noise. Sound literally hurts. My niece is 17 months old and her screams go right through my brain. I can't keep up with them.

With regards to the fatigue its not normal to be bone tired all the time. If after getting up you feel exhausted and want to return to bed after a few hours, or you wake up totally unrefreshed after sleeping hours like Notsure said then you need to get it investigated. Start by taking iron. I say this because even now my doctor keeps saying 'but your iron is low so you're bound to be tired'. Yes but after 8 hours sleeping wanting to go back to bed 2 hours after getting up? (literally getting up at 8 then desperately needing sleep again at 11) Carrying a small bag of shopping home and feeling like I just performed in the worlds strongest woman competition? I don't think so although iron IS important.

MsLucy its worth getting your results from the doctor to see what 'normal' is. My experience is some doctors think TSH level of 8 - 10 even is cool while others will express concern if its 5-6ish. Honestly my advice is to go private to check it out if you can afford it. NHS does not do all the tests you need.

notsurewhatshappening Sun 03-Mar-19 11:04:28

I haven't been diagnosed yet but my GP is pretty sure I have ME. Symptoms have been going on for 4 years since my children hot chicken pox. I had severe fatigue and itching all over when they got CP for 2 weeks then severe labyrinthitis straight after for another 2 weeks. I had to have a GP come to my house as I couldn't walk outside. Then over the next few years my symptoms came back periodically. Since December last year my fatigue and itching became permanent and worsened. Blurred vision due to tired eye muscles (had eye test). Loss of appetite. Fluey aching and tingling in hands and feet. Sleeping longer and linger at night and needing naps too. I now sleep 14-16 hours a day.
I saw an endocrinologist recently and have just had a test for Addison disease. The specialist will diagnose ME at my next appointment in 2 weeks if the addisons test was negative. I'm really lucky to have private medical insurance (DH gets it for the whole family as a work perk) so the endocrinologist was at a private hospital and the referral was much quicker. GP was on the ball and did loads and loads of blood tests so everything else has been ruled out.
That was long - sorry- but although not diagnosed yet I feel I'm pretty close.

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Whatcouldpossiblygowrong Sun 03-Mar-19 11:35:32

Notsurewhatishappening I’m glad you’re getting proper advice and support. I really hope along with a diagnosis you can find ways of feeling better - virtual hugs!
Lego sounds great- I wish mine were the same.unless the TVs on it’s near impossible to get them to play or colour or do puzzles or Lego. It’s wild play or no play. One LO has SN which also results in high energy and intensity levels and need for attention which can be draining.
Sorry to hear you feel so exhausted kinghenry but don’t feel guilt at all- it won’t help and you are doing all you can.
I have a couple questions for those a bit further down this road than me.
My skin- which id never had an issue before- has been terrible alongside all this- only on my face- constant spots- dermatitis and sore dry patches. No particular rash though. Does that sound familiar?
Also I have gained weight and feel constantly bloated and uncomfortable- sluggish and heavy. I’m naturally petite- but have gained around a stone in a year
These might be unrelated things?

KingHenrysCodpiece Sun 03-Mar-19 12:09:51

NotSure I'm so glad you're getting sorted! I am kicking myself for not having gotten health insurance a decade ago. They cover pre-existing conditions so I'm stuffed now. A dermatologist told me my thyroid is inflamed and needs to be scanned recommended a great Endocrinologist but I cant afford him.

I told my doctor what the endo said and gave her my antibody results and she completely dismissed it. Said maybe I'll refer you if your other antibodies are high. I just dont get it. I am really disappointed with the NHS. It's until you have a chronic condition as opposed to acute, that you realise just how much it is struggling and how doctors are being reduced to having to actively avoid referring you in order to save money.

KingHenrysCodpiece Sun 03-Mar-19 12:10:28

they don't

KingHenrysCodpiece Sun 03-Mar-19 12:24:19

My skin- which id never had an issue before- has been terrible alongside all this- only on my face- constant spots- dermatitis and sore dry patches. No particular rash though. Does that sound familiar?

Yes it does. I suddenly developed facial Rosacea and Occular rosacea. Eyes red and burn all the time. Had perfect skin all my life before. Never went through the spotty teen phrase. All of a sudden it appeared with burning, itching, stinging. This along with gut changes bloating. Exactly at the same time.

I am not a doctor and I don't like projecting - a lot of people think they have fibo or ME etc because they are tired, have bad memory etc. But from my experience I was going along the pathway, having early manifestations of my condition and those were the warning signs that my body was making and were ignored by doctors.

I think it's possible you are on that pathway and my advice to you, that I wish I had had, is to seek a good functional medicine doctor now, who specialises in those conditions before it becomes full blown in a year/couple years time. Taking measures now may help you avoid it developing full blown and restire your vitality. And definately get your thyroid checked comprehensively.

newestbridearound Sun 03-Mar-19 12:28:57

Hello! Hope it’s ok to join- I’ve found my people grin I’m about to have a sleep but just placemarking to come back later really. I’ve had severe ME a decade now, alongside a few other chronic health conditions, and I worked out the other day that adding up all the bedbound periods I’ve lost 3 years of my life to this illness and another couple housebound. I feel for all of us battling against it everyday. Anyway back to reply properly later flowers

KingHenrysCodpiece Sun 03-Mar-19 12:44:28

Sorry I realise that might come across as 'there's nothing wrong with you yet' And that's not what im trying to say. What I'm trying to say is: You don't feel right. Something's wrong, something's off. You know its wrong. You're exhausted without a real cause, you have unexplained pain, you're going through a total body system change. Stop doubting yourself. Don't wait for the NHS to diagnose you and the GP to take you seriously. A lot won't until you're in code red. Get some help now while things are not dire. I ignored what my body was telling me and now I'm so bad I can't get up off the sofa some days. I expected my GPs to notice. They didn't neither Fibro or CFS or M.E. are really understood.

So don't second guess yourself and wait.

notsurewhatshappening Sun 03-Mar-19 15:20:36

Welcome newestbridearound - sorry you have been suffering so long.

DS convinced me to make real cookies as opposed to play doh ones (lego lasted a good hour but no longer! ) - he managed to spray the entire kitchen and himself in cocoa powder. Deep breath, ran a bath, carried him upstairs (he is a very stocky 5 year old) then tackled the mess. It was all over the floor and inside an open drawer. Luckily we managed to finish baking and the cookies were excellent but my goodness I'm exhausted now! Legs are really sore. It's unexpected stuff like that which knocks me back. Film is on now!

OP’s posts: |
notsurewhatshappening Sun 03-Mar-19 18:44:06

Argh. DH keeps coming into the room and turning all the lights on then going out again. I've told him bright lights make me really uncomfortable so many times. FFS

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Scaredofthedark1986 Sun 03-Mar-19 19:02:53

notsure please can I ask how bright lights affect you? I’m so sorry to hear you are suffering and everyone else. I suffer with so many symptoms of fibro and similar things but can’t seem to get anyone to listen.

notsurewhatshappening Sun 03-Mar-19 19:06:46

I just feel headachey and also get visual disturbance eg seeing sparkles. It makes me feel tired too. But I can see how it's hard for him to understand. I want to lie in a dark quiet room all day. Loud noises are horrible too. Before I was signed off I struggled with teaching 32 lively 8 year olds partly because of the strip lights and incessant noise.

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