Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Magg Thanks for the info. Sorry you had such a hard time being diagnosed. I really feel for everyone who has to deal with this every day.

I can't read the rest of the posts but can see lots of things I want to chip in about. Driving and salt have caught my eye. (Just to remind myself tomorrow.)

A couple of days ago I ordered all the greeting cards I'm going to need for the the whole year and they arrived today. So tonight I wrote them all, addressed and stamped them and have put them in a birthday book file thing. I also wrote reminders of when to post each one on the calendar. My brain is mush now but I feel pleased with myself. Last year I forgot a couple of birthdays and a few times I was too poorly to go out and buy a card so DH did it which was fine but I like to choose then myself you know. Felt like something else that had been taken away from me, even though it's a very small thing it all adds up. Not this year though. Now I'm Queen of the Cards. 👑

God that was waffley! Sorry. I think it's such a relief to find people who will understand.

Maggs I do some mindfulness at home. I started before I got ill. It's a good thing generally I think. I downloaded a couple of apps to my phone

Moose Just read your post, so sorry you're having such a difficult time with your DH at the moment. Hopefully you'll both adjust and come through it stronger. You've been together so long, it must be really hard to have this huge thing that feels like it's coming inbetween you. for you. 🐒
I hope today is a better day. x

I think the GP thinks POTs is rare because they don't know anything about it and wouldn't recognise the signs if they bit them on the bum!

I have various oddities in my heart rhythm, seem to get a different result or different problem identified almost every time it's checked. As a result of my last ECG I have a Cardio appointment scheduled, but am pretty sure the messed up rates are down to autonomics and not cardiac function. I already know the guy I'm being sent to see knows nothing about POTs, because my mum saw him recently and he was clueless when she mentioned it.

I will go, as don't see any harm in having another ECG (although the last one, done by the private consultant, was normal) or a scan to rule out anything potentially cardio in origin, but that's as far as I want to go down that route.

My mum was sent for investigations due to shortness of breath and exercise intolerance. She ended up having an angiogram, that showed up nothing of any consequence, but caused two TIAs. I am fairly sure that her issues are the same as mine in origin, although different in presentation. Unfortunately she can't use my oximeter to check her heart rate as her fingertips are permanently white and freezing cold, so she can't get a reading. Hypermobility runs through her side of the family. Her father was extremely hypermobile and completely unable to stand for even short periods, which led to him being disciplined regularly for fainting on parade when he was in the army. My younger sister has Orthostatic Hypotension, but not POTs and my older one severe problems with her digestive system and more recently swallowing issues.

Quick question.

Ds2 is 11, almost 12. He's very like me physically, has Joint Hypermobility Syndrome and recently his PE teacher expressed concern when doing fitness training as his heart rate was much higher than expected on exertion and took longer to come down than usual, although he wasn't concerned enough to contact me and ds couldn't remember the actual numbers.

Since September he's had four distinct episodes of bad stomaches, with nausea, headache and dizziness. I was thinking he might be developing migraines, as they're very similar to ds1's migraine episodes.

In between these episodes he's generally fine, but has tended towards being very tired and has definitely slept later and spent more time resting than he used to. I just assumed this was the onset of him becoming a teen.

Yesterday he woke with really bad cramps and had a violently upset stomach. Then, once that was over he didn't have any more episodes but was exhausted, dizzy and nausea and a headache for the rest of the day. Today he's home again with no more digestive episodes, but still the exhaustion, dizziness and nausea - he is also extremely pale. He had a pancake for breakfast, as it's dd's birthday - we always have pancakes for birthday breakfasts and he didn't want to miss out. His stomach has been fine since.

Just out of interest I got him to lie down, took a baseline hr and sat reading with my oximeter. 87 bpm (which is within the normal range for his age) and 99% sats.

Got him to stand and his heart rate climbed to 131 within seconds, then slowly up to 137, then hung around before dropping back to 117, 111, then he started to say he needed to lie down, went deathly white, said he was dizzy and it shot back up to 139. I let him lie down at that point as if I hadn't he'd have collapsed. Sats dropped to 96%. Poor lad is now curled up in the corner of the sofa looking decidedly pale and odd.

Could a virus be causing this increase or do you think there is a possibility that ds is developing POTs? I am diagnosed, just about, we suspect my Mum has it, my maternal grandfather used to faint during every single parade and sentry duty and I am really worried ds has inherited it too.

Hello, I've just been told about this thread!
I wonder if any of you can help me.
I do have anxiety, it's probably worse than the doctors realise but I deal with it well, I think. I try to be as positive as I can and ride it out when it gets too bad. I think it's linked to my hormones as it's always worse just after my period, for about a week.
On top of this though, I get extreme fatigue. I've had it for years, I haven't been able to work or anything. The most I can do at the moment is drop off dd to school and pick her up. That's it. I don't drink, don't go out, have IBS too which has been known to be linked to CFS.
My GP thinks it's CFS as we went through the symptoms and I had all of them. He's going to contact me again after speaking with some other GP's with more experience of it.
But how do I know it's not anxiety causing it or the other way round?
Last week I had terrible anxiety, the worst i've had in ages. I had intrusive thoughts, panic attacks, shaking at night.. This week I have flu symptoms but without the streaming nose and eyes and temperature that you usually get.
Does anyone have any experience of CFS and anxiety? Are the two linked?

Realitea
This is my first post on mn although I have lurked for a while. I have a good mix of both cfs and fibro and I also have depression and huge anxiety.

For me personally I feel that my anxiety is caused by my cfs/fibro combo. Not so much as a physical part of the conditions but as a side effect from living with these illnesses for over 20 years now. Even now I can find it hard if not impossible to always separate what are cfs symptoms and what are primarily anxiety or depression related. I tend to now just try not to worry too much about it and concentrate on dealing with it.

I have found meditation to be very good for helping with panic attacks, I will do it in the evenings and it helps regulate my sleep patterns. As you can see by what time I'm posting this that I really should take my own advice and start meditating regularly again

Thanks I will have to look in to meditation and learn how to relax my mind!

Well I've been awake all night. Not even dozed. 😩 So I guess today is a total write off. I've been looking forward to the weekend all week as DH is off so I thought I might be able to get out for a bit but now what? I couldn't even wash my hair last night so that needs doing too. I hate this.

Moose hope your ds is feeling better. Dehydration makes POTs worse so a tummy bug (which disrupts eating and drinking - or just absorbtion) could I should think (not a medic) make symptoms worse. Its possible that your cardiac specialist may have read up on POTS (hope!) if your mother asked about it. We have been married a similar time. Change is not easy. Its taken a while to adjust to my illness (CFS) but understanding I had POTs( a dx that came after 2-3 years after I became unwell) has helped - its something my engineer DH can understand better than just a word. We are adjusting at the moment to a change in DH work pattern to part time, which is not easy at present as it has upset my day to day pacing IYKWIM. I am accustomed on non work days to doing a little bit, then resting a little bit! I hope things settle down for you and your DH and understanding ( which always seems to take longer for partners) soon comes. I guess you are still adapting to your diagnosis yourself. (Hug)

Please does anyone know what I should do today? If I stay awake I'll get very ill, worse than I am but f I sleep tonight will be awake too and then Sunday will be spent in bed and then I'm on my own all week in the day again so stuck in the house.

I don't have a clue what I'm doing. And no one will help me. My GP says to rest that's it. My family seem to be leaving me to it. DM is sympathetic but doesn't call or come here. Siblings don't seem to want to understand so they're out. Never call anyway. Friends have dwindled. I'm stuck lying in a bed all day everyday pretending it's all fine and I'm getting better, just really slowly, when the truth is my life is being wasted and time is passing and I still can't do anything. I'm trying to be positive and Polly bloody Anna about it but it's getting a bit much now.

And you're all similar so I should not be posting but I don't know what else to do.

Sorry I shouldn't post on no sleep. Have to keep telling myself tomorrow will be better.

Waggle - sympathies. Could you try and get a couple of hours and then stay up the rest of the day? If you don't want to do that maybe you could wrap up warm and go and sit outside for a bit - it may help to lift your mood if nothing else (i am assuming the sun is shining like it is here - if not ignore me!). It sometimes helps to dislodge the fuzziness.

Realitea - i've had fibro symptoms for 30 years, including episodes of depression and anxiety which culminated in a major breakdown about 10 years ago. I didn't have the fibro diagnosis then (the various symptoms were being treated separately), so it was treated purely as a mental health issue. I had to give up work as a result. Since then the depression has not gone but improved but the anxiety has got worse.

Some elements of the anxiety seem to be purely physical - they start randomly when i'm otherwise quite happy, and i wonder if this is some kind of fibro-related adrenal dysfunction. On the other hand i have crippling social and health anxiety, which are very much situation-driven. I really don't know if one sort triggered the other or if they are connected.

I don't know if you saw my post upthread about driving but that's a good example. Are the physical difficulties the result of my anxiety about driving, or am i anxious about driving because of the other difficulties? It's certainly not a stretch to think out that me/cfs/fm could lead to mental health issues, but i do feel there is something else going on beyond getting depressed through living with the symptoms.

Velvet Thank you. I'm feeling very sorry for myself today. I was very upset. Just had enough you know. I can't manage to go outside,(although I like that suggestion and I'll try it another day), but I have a couple of hot water bottles, I've eaten and washed my face and teeth so feeling a bit better. Back in bed. I will get some sleep today.

I took 10,000 iu late last night as I'd forgotten in the day. Wondering if that caused the insomnia to be worse last night.

Hope everyone is having as good a day as possible. It's looking like it'll snow here later.

10,000iu vitamin D

Brain has gone

Quick update...bloods revealed low vit d levels so dr told me to supplement.
I've also had an x Ray on my right femur.
Still feel shocking

Did he not give you a Vit D supplement?

A night in a and e recently showed my vit d levels were really low (odd because they were normal in my last test a couple of years ago), and I was given megawattage vit d to get my levels up quickly - I had to take one a week.

No he said it wasn't massively low so a normal supplement would do.
Got the vitabiotic one.

Hi can I have your advice pls. I've been suffering from depression caused by a number of horrendous situations, for a few year and also have a disability so I am taking ads and painkillers. however Over the last couple of years I seem to be going even further down hill. some days I can't get out of bed and I sleep all day! I have no energy and no get up and go. my mums calling me lazy but I just can't. my doc says it's the medication that I'm on but I've been on ads before and never felt like this. I was advised to read a blog about cfs/fibro and there was a big red flag that stuck out. I'm only 46 and during this time all of my period have stopped yet from blood tests I'm not peri menopausal! let alone menopausal!
this isn't me, my house is a real shit tip, I'm so ashamed of it. it takes all of my energy just to get up and dressed and I never go out. I want my life back. dies anyone know how to get taken seriously and how I can get some help. (I've got a workman coming round this week I hope he's had his tetanus) Tia

omg sorry for essay

I can't think clearly to form an answer but jut wanted to give you There are people on here who are really knowledgeable so they will help you. Sorry you're feeling bad. I hope you can get some sleep tonight.

Hi, just place marking at the mo. Pleased to have just discovered this thread! I've had M.E. for 2 years.

thanks Waggle
Malin Me too, just at the end of the line tho as feel so alone and unsupported. hope you've got help and support in your life.

The feeling of being alone with it is awful sometimes isn't it? We're all here though. You're not on your own feeling the way you do.