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)

Pleased to hear your cardiologist / electrophysiologist was a suitably knowledgeable about Pots. It makes such a difference! I too have heard good things about Invabrine. fingers crossed for you.

Daisy do you have to drink lwater and rest after chiropractor treatments? I often feel very tired - and usually a bit achy. Badgers so sorry you are poorly. If you have an odometer it should show HR, it's easier to use than the blood pressure cuff thing, especially if you feel unwell.

ThAnk you
I Have a pulse ox meter ,which whilst it shows my heart rate is elevated it also tells me my oxygen sats are 99 so I'm not too worried.
Would so like.to feel better though

How is everyone feeling this morning?

I am feeling much better. Exhausted, after a very bad night - lots of horrible nightmares - but like an exhausted me, rather than the totally brain fogged zombie I was on those pills. I can actually think and string a sentence together this morning and have lost the horrible 'flat' feeling I've had for weeks. I'm not planning to take another unless I get rebound palpitations. Cardiologist said I may be ok to just stop, as I haven't been on them very long, but I will take another and keep extending the time in between if I start to get a reaction.

Just goes to show. The treatment made me feel, mentally, like I do when I have a crash, which is the polar opposite of what I needed. The guy I saw yesterday was so lovely and said he would have taken me off them weeks ago, as they clearly didn't suit me and he would never agree with a dr keeping a patient on something that is making the patient feel worse.

Proof then, that it wasn't for you?
Still feeling rough. Takes me sooooo long to get over viruses. Ds2 has woken up all snotty today and I just dropped a whole new bottle of nurofen liquid on the kitchen floor and it smashed :(
We are off out to mums soon as it's a no is afternoon and I'm getting fed up looking at the same 4 walls.
I've been quite productive today...washing and putting it out on the line.
I've even stripped the beds!

Yep, no bad stomach today either, which is even more evidence.

You have been busy, but make sure you're not using up all the energy you need to get better. Fingers crossed ds2 just has a 24/48 hour virus.

We're about to get a visit from the same visitors at short notice - again, so I've had to run round and do some housework. The place actually looks half decent now. I couldn't have done what I've got done if I hadn't stopped the bisoprolol.

I will tell my mum I know someone else who struggled with it moose...I think she thinks she's the only one!
I'm in bed now feeling rough BUT dc off to pils tomorrow (as long as ds2 is ok) so I can do very little if I need to!

You only have to Google it to see how badly it affects some people Badders, so your mum is far from alone.

Dh is working away for an unspecified amount of time from tomorrow - has to stay until the job's finished and software's working properly, which isn't looking like a short job. There's no way I'd have coped if I was still on those evil pills. I've just ordered an extremely lazy Tesco shop, consisting of lots of pre-prepped food and things like fresh pasta that I can cook easily for the dcs. I am usually the first one to baulk at prepared veg etc, but it's a case of needs must this weekend I'm afraid.

I think it sounds like you need to stay in bed tomorrow. If you don't put yourself first at some point you are going to keel over and then not have any choice in the matter.

Can I pull up a chair? I've had no official diagnosis but I'm pretty sure I have fibromyalgia.

On Monday I went a bit mad and cleaned the house and have paid dearly for it for the past few days. Today I was lucky enough to be able to go back to bed woke at 12.30!

Anyway am having blood tests tomorrow, GP is going to refer me to a rheumatologist, she's given me cocodamol which help a bit and naproxen which I'm convinced has aggravated an ulcer as I'm now getting stabbing like pains in my breastbone coming in waves as well as the other aches and pains.

I'm coughing up green gunk but no temp or low sats
Grr.

MNaged to get into Drs amazingly!
10am
They will just tell me it's a virus and to go away won't they?

sweetkitty make sure you always take naproxen with food. To be honest, naproxen and cocodamol aren't much use for fibromyalgia so if I were you I'd just stop taking it & see if you feel better. It's a weird thing to prescribe to someone with a history of ulcers .

Hello sweetkitty!
You won't remember me (I was under a different nn then) but you gave much needed advice and sympathy when we were selling our house and trying to buy this one A few years ago!
Sorry to see you join our club :(
I'm off to dr this morning as i really do feel quite ill. Been ill for all of March tbh.
But if he gives me abx I will need anti thrush meds too (always give me thrush) and I am allergic to penicillin so finding a med I can take is always fun!
I'm amazed you were given NSAIDs if you have an ulcer - I had gastritis after an op and I was told in no uncertain terms no more NSAIDs for me!
I find co codamol quite good (.apart from the constipation effect!)
Hope the blood tests are helpful

I was never formally diagnosed with an ulcer though it was 7 years ago and I went to OOH as I wS in so much pain they gave me medicine can't remember now and it went away in about 2 weeks, it might not be it but the waves of stabby pain are familiar.

I might not even have fibro but the list of symptoms was like a check list especially the tender points, the fatigue and the sensitivity to cold and pain. Cold hurts me so much.

I'm getting zero support at home as well

I'm sorry sorry to hear that's dh works away (he will be away for half of april) and it's hard
You were probably given a med called omeprazole - your symptoms went away so prob was an ulcer. They usually arrange an endoscopy to make sure (they did with me)
Could you call the second and ask for a prescription if omeprazole to be left out for you?
The pain of ulcers is horrific and often mimicks heart attAck!

I'm sorry sorry to hear that's dh works away (he will be away for half of april) and it's hard
You were probably given a med called omeprazole - your symptoms went away so prob was an ulcer. They usually arrange an endoscopy to make sure (they did with me)
Could you call the second and ask for a prescription if omeprazole to be left out for you?
The pain of ulcers is horrific and often mimicks heart attack

Dr give abx but told me to wait 48 hours in case it gets better by then - which I will as I hate taking them but if no better by Monday I will start them
Still got fluid in my ear too
Ugh

Don't know if it was omeprazole I had that when pregnant called it my wonder tablet for acid reflux it was so good.

So bloods all take they are checking for everything so the nurse said.

I've only had one cocodamol all day and I've felt it, soles of feet were hurting, is anyone else really sensitive to the sensation of the ground? How can I explain it if I wear thin soled shoes like converse I can feel every bump and stone and the cold seems to come through the pavement? Recently got Uggs and I love them it's like cotton wool on my feet so warm. In the house I usually have a thin pair of socks a fleecy pair and my slippers. Knees hurt too and my back and shoulders really hurting too think I'll have to take another 2 cocodamols.

Support at home isn't usual practical support DH is fab with that its the symptoms he thinks they are all in my head and I should just get on with it and no one needs that amount of sleep

Badders - I need to know who you are now lol I'll PM you once I get on an iPad later

Moosemama - I know you from the dog thread I think you got your young boy the same time I got my dog

Tbh a lot of people can feel that way about fibro - not an excuse for him to say unkind things but it's not uncommon sadly
I have recently had lots of knee and back problems and the physio has told me that it's all from my feet - my feet are pronated and I now have to wear orthotic insoles!
Added to that my new varifocals and I'm feeling quite old now!!!
I had X Rays which were normals and bloods which showed I am vit d deficient so I've been taking supplements
I'm taking the abx - dh got them for me

sweetkitty I'm afraid you might have to get used to people thinking like your DH. On the other hand, since it's a diagnosis of exclusion and you're right at the beginning, it could well turn out that you have something that people are more accepting of. If you do get diagnosed with fibromyalgia by rheumatology, your DH may come around on the basis that a specialist has diagnosed you.

I'd also try and get a formal diagnosis for the ulcer, especially since without one you're being prescribed drugs that are potentially harmful.

Hi sweetkitty yes I remember you. Your pup was a Rhodesian Ridgeback, iirc? Pip will be three years old in a couple of months. He's calmed down a lot, but still thinks he's a puppy!

So sorry to hear you have fibro, but glad you found this thread.

Badders I'm glad you started the antibiotics, I would do the same I think. Hope they kick in quickly and you start feeling better really soon.

I am soooo exhausted today. Put my Tesco food delivery away, did the breakfast dishes and haven't managed anything else all day. I don't think my body really appreciated me stopping the pills so suddenly, but despite how rough I feel today, it's a million times better than how I felt when I was on them, so on-balance I do think the cardiologist gave me the right advice. I suppose it will just take a couple of days to adjust.

Dh is away so it's just me and the dcs - and the dogs of course. I'm so glad I ordered easy food, as I am really not up to cooking tonight. I've also bought cereals, so the dcs can make their own breakfasts, rather than me making them all porridge with fresh fruit in the mornings, which is what they normally have every day. You'd think all their Christmases had come at once by their reaction.

Hiya everyone, can I join too?

I'm Steve, I was officially diagnosed with CFS/ME in September 2009, but the GP was very dismissive of the condition and simply told me to rest more. Moved home in the October and from then on my condition deteriorated significantly.

Even now it's hard to believe that I went from being very active, sports refereeing at the weekends, caring for disabled partner 24/7 and looking after house and two young kids.

By mid -January 2010 I was unable to get out of bed, significant pain in my joints when I tried to move. I saw new GP who said I definitely had CFS/ME after blood tests to rule other crap out.

My condition deteriorated to present condition since end-Jan to present day. I'm bedbound, can barely walk without severe pain, have pain through my joints and muscles pretty much constantly. The fatigue is worse though - rebound is a bitch, going to the doctors in the car, 2 miles, will see rebound hit me and exhaust me utterly for a full day.

I'm on a load of pain medications, doctors are evasive when asked for prognosis. I could do freelance web work if I could see some improvement maybe, am starting an OU degree soon - worried about the workload but at 38 I need to do something. My dream was always to teach and live abroad - I've spent the past 20 years either caring for a disabled person or being disabled it sucks.

I hope you're all having a pain free relaxing evening. It's a horrible condition. Much hugs, to you all.

(Sorry for the essay!)

Hi Steve . I know what you mean. It's like your life is on pause but the world is carrying on without you.

Hi all, I was on the thread before under a different name but am terrible at keeping up!

I was officially dxd with Fibro today. Doesn't really change much other than the fact I know for sure so I feel validated saying it IYSWIM.

I am pissed off because shortly after sharing this with my friends and family on FB, my friend who is mega into Juice Plus posted one of those testimonials specifically about how it cured her fibromyalgia...

Sorry for the rant.

Anyway, I am now coming to the end of my employment. I'm waiting for redeployment at the moment but it's not looking hopeful that they'll find anything. I have tutoring to fall back on so it's not a disaster thankfully.

Steve - that's sounds awful

Moosemama - yes that me she's almost 3 now as well. I can still walk her although hills are difficult and I do pay for it afterwards but I really don't want to give up walking the dog.