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)

Moose
I'm persevering with the insoles which he has said i will have to wear for life
I only have 2 more appts (with a break for Easter) and then if no better I will be "referred on" - God only knows who to!
I'm not having another facet joint injection. No way.

Badders.... I hope your arse is less broken soon (very weird writing that! )

Am I the only one who has seen a Rheumatologist once for diagnosis and GP ever since? The Rheumy wasn't interested at all once she'd diagnosed Fibro. My GP is good but I do feel lack of support.

Minions - I finally have my pain clinic dates through for the "self help group" but it still doesn't start till May(!) I've heard mixed reviews as to whether it can help but from what I gather, the idea is to try and help you figure out ways to deal with the pain. It might be worth a try? I figured it couldn't hurt. My pain is very similar to yours with my pelvis, back, ribs and shoulders constantly bad. I started off with Fibro as a diagnosis but then told I had CFS as well. I found physio caused more pain and once the physiotherapist realised, she said there was nothing else they could offer. How old are your dc? Maybe we can think of ways to help?

That's exactly what happened to me
Saw rheumatologist and she dx fibro and that was that
No pain meds given, no advice other than "come back if you get worse"
Well, I am worse. But if I have an issue - like my back atm - I go to the Dr.

I also saw the rheumatologist once. They asked GP to start me on Gabapentin and that was that. Although the Gaba does help a lot with the tingling and creeping flesh sensations.

Firstly, it's not MS!! LP results completely fine.
Secondly, I didn't hand her her ass. She was completely different with me today and I think she knows she fucked up. One last chance.

She says it's some kind of pain condition. As far as she is concerned it is not just fibromyalgia. She thinks it's likely Ehlers Danlos Syndrome. I am being referred to OT and fatigue clinic. I have to get the GP to refer for genetic testing as the kids - Lola especially - is showing symptoms. She says it is all clearly highly debilitating and I have to delegate as much as I can to other. She actually said "looking after yourself and the kids is the most we can expect you to do". She's confident I won't work, wants me to apply for PIP and will fully support. Gave me some advice about dentists etc due to lidocaine resistance, exercise, pacing etc. Says the OT can help get some adaptations done.

With management and support we can hopefully slow down the degeneration. It's all quite a lot to take in. It isn't going to go away

Sounds like it turned out to be quite a good appointment Alice, although it's never easy stuff to hear, at least someone is actually saying it, iyswim. She sounds like she handled the results a lot better than my neuro did - but then, as you said, she knew she'd already fucked up.

Is she thinking something other than Classic or Hypermobile type EDS then, if she wants genetic testing done?

They make it sound so easy talking about pacing and delegation don't they? Shame it doesn't work like that when you have to live in the real world.

My Mum has just been referred for probably EDS diagnosis and my GP wants myself and my dcs tested once she's diagnosed. Dd is only 7 and just very bendy, but ds2 has hypermobility syndrome and suffers daily pain. I will feel a lot better about things if they just get them onto a heart screening schedule, given Mum's recent dilated aorta diagnosis.

If you don't mind me asking, what did she suggest about dentists. Local anaesthetics don't work on me at all and I have two teeth that need sorting, but am too scared to go.

Alice...whilst I am relived for you it's not ms, I'm sorry it's another life long degenerative condition :(
I have heard of eds but I'm afraid I dint know much about it, other than it's very hard to get dx.
I hope you feel better now you have some answers and can out a treatment planin place and start your pip assessment.
You know he virus I thought had gone?
Well...I've work up today with an evil sore throat and coughing up grunge.
Lovely.
Just got to get to 1.30 tomorrow!.......
Love to all x

Glad it's not MS Alice but a bit of a bummer of the possible EDS diagnosis That said, she suddenly sounds a bit supportive with suggestion of applying for PIP and talk of pacing etc - not that that is easy to do. Hope you can get a plan and testing sorted now.

I had first chiropractic appt this morning.... at the session, it wasn't too bad, a couple of really painful moments and some horribly sick sounding crunches

Blimey daisy that sounds so painful. Sorry I can't offer any useful advice, because I don't know anything about Chiropracty (sp?) I'm too much of a wuss and opted for Osteopathy instead.

Hope you are able to rest and recuperate this evening.

Alice

Have a read of this article on the Hypermobility Association's website. It explains the connection between EDS and other health issues, including pain and exhaustion and how they are often confused with Fibro and CFS.

Ow
My throat hurts

Badders

No
I only do 1.5 hours but it's end of term assembly too in the morning.
I felt so ill the other week when dh was away I really thought I was better...sigh.
Least I have some time off...

Do you have to go to the assembly? I no longer go to special assemblies unless one of my dcs is 'performing'. It's just something I've had to accept that I can't do anymore, not least of all because the heat in that hall sets my PoTs off and I'm always worried I will pass out in front of everyone.

Make sure you take care of yourself over the holidays then. Start of with some lovely pj days and don't even think about doing anything else.

Oh - and gargling with soluble aspirin will help your throat.

DS is getting a certificate
I have been gargling with co codamol and using difflam

Daisy im new to all this so i dont understand the dc n oh n stuff lol x

Mumof2 here's the Mumsnet list of most used Acronyms.

dc - darling/dear children
ds - darling/dear son
dd - darling/dear daughter
oh - other half
dp - darling/dear partner
dh - darling/dear husband

If there are any more you want to know, just ask.

I am on my knees this afternoon. Both my driving instructor and my dh have said they don't think I'm myself and they think it started when I was put on the beta blockers and I'm inclined to agree. On top of the breathlessness, exhaustion, upset stomach etc I am feeling so flat. I've just checked and the pills can cause that too. I will give it one week of taking it in the morning and if I'm no better I won't be asking to be taken off it, I'll be telling them I'm coming off it.

Moose...like statins, beta blockers can cause myriad symptoms that Drs simply dismiss.
My,ate dad was on beta blockers for years and they made him so tired. I'm also convinced they were responsible for all the gastric issues he had prior to his death (not his cause of death btw)
Statins gave my mum such bad leg pains that for a while the Drs didn't realise that it was actually her femoral bypass hat had occluded :(

Badders how are you feeling now? Did you manage to get to school ok?

Moose if two people have noticed you are not quite right plus you have noticed other symptoms then yes, it's worth considering whether the pills are right for you. A week's trial seems reasonable.

I'm not in agony like last night but symptoms vary from very sore in a painful way to a real deep ache, I feel so tired and just bone weary if that makes sense. DS2 started Easter hols today so I made myself do some baking with him (gets him off the pc for a bit!)... I guess the consolation of no spoons is lots of sugary stuff to eat?!

Hi daisy
I made it to the assembly and spent the whole time yawning
Work was ok but cold and wet :(
Back/hips/knee not too bad but tbh didn't wear my insoles today or do my exercises! bad badders!
DC broke up today and are off for 2 weeks and 2 days (inset Day tagged on to holiday)
No plans other than going to pils on Sunday and out to idea with Dh on Tuesday God help me!

IKEA even!

Thank you for the list lol and my sons are 3 and 8 :) but the eldest has a few behavour problems (no thanks to cams saying he was fine) so that adds to the fatigue lol but love them both tones they keep me going when i hit that black cloud

Badders my Mum had a dreadful time with statins. She was in so much pain with them, she could barely move and that was on top of her usual pain. She's suffered chronic pain all her life and for her to complain it must have been really bad. They took her off them, but not want her back on a different type, even though they know, at 69 this year, she only has very slight furring of a very subsidiary and unimportant minor part of her heart. Her cholesterol is very slightly over the baseline for statins. She then discovered the ones they've prescribed this time are contra-indicated with two of her other medications. Her own GP agreed and changed the prescription, the locum she saw a few weeks back argued and changed it back! She then saw her own GP who changed it back again! What a farce - especially as she's refusing to take them anyway.

Make the most of having no plans and get plenty of rest if you can.

Daisy it's now three people, as Mum has expressed concern today as well now. I've been on them for a month, taking them in the evening. Have to start taking them in the morning from tomorrow - although no-one has told me how to move from evening to morning safely. I am only giving it one more week though, as this is unbearable.

Glad you're not in agony, but sorry to hear you're still in considerable pain. Enjoy the fruits of your baking.

Mumof2 I have three, two boys and one girl. The eldest is 14 next week and has ASD, my middle on is 12 in a couple of weeks and has Joint Hypermobility Syndrome and my daughter is 7 and so far (fingers crossed) although very bendy, has nothing we are concerned about! They make me laugh, cry and swear in equal measures!

Scary isn't it?

I'm fed up today
Lovely sunny day and I've spent it in bed
Feeling rough as hell - cough, sore throat, headache...
Luckily dc went to pils at lunchtime so at least they have been outside
Haven't been to see mum so feel guilty about that too
Might try a hot bath....
Hope you all have a peaceful - and healthy! - e mail