ME / CFS / Fibro spoony thread

[notsurewhatshappening]

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!).

[notsurewhatshappening]

Scaredofthedark sorry you're feeling unwell. What kind of symptoms are you having?

[notsurewhatshappening]

Big sunglasses 😎 also hide my huge dark circles!

[KingHenrysCodpiece]

Yeah I look like a panda too. Sometimes I just look well rough. Unfortunately the heroin chic look is no longer in or I would fit right in. I tried different eye creams to brighten the area but they did nothing much. It's decent sleep I need. I'm thinking of trying those Elizabeth Arden ceremide creme capules. It's bad enough feeling yuck without also looking like a zombie on crack!

[Scaredofthedark1986]

@notsurewhatshappening I seem to be developing quite a long list of symptoms. I seem to have good days and bad days. Today is a pretty bad day so I’ll put down my symptoms today. I am completely exhausted, very heavy achy limbs, pain in shoulders, knees and fingers, pelvic pain, very very itchy eyes and nausea. I nearly always have some pain and achy limbs. I drop things because my fingers give way. I suffer regular stomach issues, diarrhoea and constipation. One of the things that worries me most is that when I stand up my legs go very weak. They sort of have a fuzzy feeling from the thighs down and they feel so weak like they will give way. To date that hasn’t happened but it scares me. I also get burning and throbbing pains in my joints regularly, usually my knees. Also what people have said on here about noise and light rings so true. I desperately crave being in a quiet, dimly lit room because the noises and light feels like an assault on my senses but with 3 children that doesn’t happen often.

[Scaredofthedark1986]

I am having treatment for under active thyroid and my thyroid levels are ok now. Also I’m taking vitamin d supplements but not really noticing any improvement with them.

[PetuliaBlavatsky]

scaredoftgedark I've had exactly that weak, fuzzy feeling in my legs, and I can't walk any further without holding onto something (usually one of my kids). I have pernicious anaemia and is really urge you to investigate your b12 levels if you haven't already. B12 def can cause all manner of problems, starting with extreme fatigue. Breathlessness, palpitations, weird nerve issues (tingling/numbness/crawling sensations), 'losing' words, clumsiness, etc etc etc.

[Scaredofthedark1986]

Oh that’s really interesting PetuliaBlavatsky I can definitely relate to the weird skin crawling and tingling sensations. Often my skin irritates me so much that it doesn’t ease at all unless I take everything off. I can’t wear a lot of clothes I used to wear anymore because they make me feel so uncomfortable.

[KingHenrysCodpiece]

Scared You sound like me at the beginning of it all. So sorry you're suffering. Petula is right regarding B12. Get it tested then take a B complex supplement. Make sure your vit D is high dose. I have all the symptoms you mention.

[notsurewhatshappening]

Scaredofthedark I started a thread on style and beauty (a bit ridiculous as I'm neither stylish nor beautiful at present)- about comfy clothes for sick days. There were lots of nice ideas about cosy things to wear.
Itching / crawling sensation - yes. My B12 was high when it was tested and it does seem to be a symptom of ME / CFS. Wobbly legs thing sounds horrible.

[Whatcouldpossiblygowrong]

I feel so good to have a community of people to talk this through- but also like an imposter who is just making a fuss. Today my sister came to visit with her kids and I played and hosted and went for a walk- not that far- spoke to her about it all and she said I have 100 times the energy she does and she doesn’t know how I do it all- my kids are noisier and more energetic than hers. She suggested I go and take a week off from the kids for a week and see if I still feel tired . Good point. Now maybe it’s all in my head that it’s more than that- except now my eyes are stinging my back is aching like a *itch and my knees and calf’s are throbbing- so that can’t be normal after a long day with the kids- or is it?! Just feel confused tbh

[Voila212]

Hello can I join too? I was diagnosed with fibromyalgia nearly 3 years ago. I have had bad spells and good spells. The last 6 months have been he'll however, I have extreme exhaustion that climbing the stairs leave me breathless nd sweaty. The pain seemed to take a back seat to the tiredness until yesterday. The pain yesterday was unbearable. I felt bruised all over but the sudden contraction like pain in my knees and the soles of my feet took my breath away. I'm worn out from this and the idea that some people and professional think it's not real upsets me terribly. No way in hell could I have 'made up' a condition like this. It's absolutely unbearable and horrible.

[PetuliaBlavatsky]

Sorry to contradict KingHenry but testing for b12 levels is only the first step and taking a b12 tablet will only help if the deficiency is dietary related (vegans and sometimes vegetarians struggle to get enough). If it's down to an absorption problem (some digestive conditions, coeliac disease etc affect it) or an autoimmune problem (pernicious anaemia) then the only treatment is injections.

[KingHenrysCodpiece]

I'm happy to contradicted I had no clue about that at all!

[KingHenrysCodpiece]

Voila I can relate. I get that same heart pounding rapidly, sweaty and sometimes dizzy after just climbing one flight of stairs. It's ridiculous!

In terms of doctors not understanding it can feel like you are pounding your head against a brick wall. Some of the things I've been told are too upsetting for me to think about as I felt so humiliated at the time. But one sterling example was when I was told by a top consultant at an allergy clinic that there was no reason to bail out on my injection that day because 'Fibromyalgia is a made up syndrome that does not exist' followed by 'But I'm sure you believe you're experiencing these feelings, but sorry it does not exist'

But there are decent doctors who know a little about it. But I have yet to find a mainstream one who really understands it.

[Scaredofthedark1986]

notsure I will look up that thread. Maybe I can get some more ideas off it.
kinghenry I’m sorry you are suffering but I am so relieved to hear that you have the same symptoms as me. I tend to feel like it must all be in my head. I keep being told it’s tiredness because of the children or something I’ve eaten. It may be something I’ve eaten but I don’t think it’s normal tiredness.
It has been so interesting and helpful reading through this thread. Thank you so much for starting it and thank you to everyone that’s contributed.

[notsurewhatshappening]

Let's try and keep the thread going. It's nice to know I'm not alone.

Comfy clothes I like best, in a nutshell: leggings and an oversized jumper. Lucy and Yak dungarees. Next joggers and a boyfriend cardigan. Jogger jeans with nice soft sweatshirt. Ugg slippers

[KittyB52]

Morning all! I was just searching Mumsnet to find out if heartburn could be a symptom of fibro, and found this thread. I didn’t realise I had fibro as a real diagnosis until last week when the rheumatology nurse called me to check how I was doing with meds, and she told me the specialist had put in my notes ‘fibromyalgia, chronic fatigue, connective tissue disorder’. So, there we go.

I am currently feeling rough as my back is sore and I have heartburn. I never have much energy, and feel like I have had no sleep. I have an almost 2 year old DD and I don’t do as much with her as I would like because I just feel knackered. So there’s an extra dose of guilt on top of everything.

I also suspect I am in the menopause, although currently, the only symptom I have is very mild hot flushes. I know there is a lot of overlap with symptoms though, so who knows? I am steadily putting weight on as I don’t get out walking as much as I used to and it’s too easy to grab something to eat rather than trying to eat healthily.

Oh, and the rheumatology nurse gave me a prescription for hydroxychloroquine and I have been worrying about getting side effects so I haven’t taken it yet. Which I know is stupid, but I worry that it might cause more problems and I worry how I’d cope with DD.

That was a bit of an essay, sorry.

[Whatcouldpossiblygowrong]

Kittyb52- I don’t think you’re being stupid- it’s normal and sensible to think careful and worry about side effects. Could you speak to a specialist about that to reassure you?
I’ve woken up with achey knees- a stuffy nose and very tired eyes. However- I decided that from today I’m not going to stay in bed just get straight up and embrace the day- I unloaded and loaded the dishwasher - made breakfast for me the kids and the OH- made his lunch- packed kids school bags and had a warm bath. To be honest- do feel better having done that. Knees are still a bit sore but I don’t feel as poorly as I did when I woke up. Arghhh perhaps it’s all just about me getting on with it and not dwelling on it- gradually getting less colds and having more energy as I eat better and exercise? So the cycle continues. But I really felt so dreadful last week. I either had a cold and pushed it too hard- or it was a result of attempting exercise on Monday. Who knows! This thread is helping me to reflect which is good in terms of getting to the bottom of it

[notsurewhatshappening]

I always feel really stiff and knackered when I wake up in the morning but having a shower and making breakfast for the kids slowly helps to loosen me up. Coffee obviously helps wake me up too! Having said that I'm back in bed resting already at 10am after dropping kids to school and having a cuppa
I tend to spread house jobs through the day now eg washing, dishwasher, Today the tesco food shop is bring delivered so will need putting away etc. I cancelled my gym membership a month ago and use the money for a cleaner. It is brilliant - she knows I'm unwell and is really lovely.

Whatcouldpossiblygowrong listen to your body- if you need rest then rest. Illness is different to just being tired. Hope you are ok.

[Steeve]

Hi everyone,

I'm Steve, I was dxed with M.E 9 years ago, then Fibromyalgia 7 years ago, then PTSD/cPTSD, and recently Myasthenia Gravis and Choledocolithiasis/Biliary Colic.

I'm bedbound at home, my energy levels are persistently in the gutter and I have persistent pain throughout my joints (and excruciating abdominal/back pain when the Biliary Colic kicks off twice/three times a week).

I take a load of drugs - Pregabalin, Oxycodone, Tramadol, Propanalol, Sertraline, Chlorphenamine, Omeprazole, Naproxen, Paracetamol, Creon 250000, Diazepam and Ondansetron. Probably a few others I can't remember!

I get really frustrated, because I have ambitions of doing stuff, and try, but it's literally impossible with the conditions controlling my life. I'm only early 40s, was 31/32 when I received the M.E dx.

So there's my introduction, I fully intend to lurk here and shall reply to any posts I can add value to.

to all of you suffering these horrible conditions

[Bringbackthestripes]

Joining.
I just don’t have the energy to read through all the posts yet so just place marking really.

[notsurewhatshappening]

Hello Steeve and Bringbackthestripes

Steeve you have a lot going on there. Sorry to hear you are stuck in bed- that must be horrendous. Thanks for coming to join us.

[KittyB52]

Hi Steeve, thank you for joining us.

Whatcouldpossiblygowrong I suppose so. Or I could just take them and see how I get on. I have heard that they might help with fatigue, so that is tempting. I don't know why I have developed a sort of anxiety about this medication when I have taken other meds for things in the past without this drama.

I would love to try a bath in the morning to help with stiffness but I would struggle to get in and out of the bath, and to dry and dress myself. At the moment, our routine is that DH gets up and gets DD ready while I sit with a hot water bottle on my back. If I feel up to it, I get ready quickly before he leaves for work, otherwise I get dressed while DD is having her breakfast, and get a shower in the evening when I am more 'bendy'.

[notsurewhatshappening]

Argh can't sleep. I know I shouldn't be looking at my phone but meh. I have a weird pinchy pain on my right side just above my hip and it's driving me mad. Itching is bad too.so tired.

[KittyB52]

I hope you managed to get some sleep, notsure.

I had a slightly better night’s sleep although I woke several times with my sore back. Heartburn kicked in the minute I woke up too.