CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Thanks for all the kind words. Struggled in today. Feel totally wiped now. In fairness, work have been really good. I just wish I could shake it off - I seem to have been flaring nearly continuously for a year now! I know what I need is a real break, just need to make it to summer. I did rest properly last year and felt really good, then caught an awful virus which set me right back.

Hope everyone is having good days .

I know there are some here with ME who have kids with ASD - I think this research may be of interest as I know they are looking at cell danger response in ASD too.

www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/
"The results showed that there was a chemical signature in ME/CFS that might ultimately be used to help physicians diagnose and treat the disease."

stanmed.stanford.edu/2016spring/the-puzzle-solver.html

kinky do you find that you're less able to bounce back from flares as time goes on? I used to have very distinct flares, lately it seems almost like one giant flare and even after a break from work the minute I go back I feel like I'm back to square one. So frustrating.

Know what you mean by flaring continuously, kinky. I feel like I did pretty well last summer and start of the autumn, and then everything fell down. I remember at the time feeling like it was all very 'fragile' - and it was true. I was still doing far less than I wanted, and now I wish I could just do that much. If DH could get a cleaner sorted it would be such a help, but people keep not calling back, or getting to the stage of coming for a visit but then stop communicating, or the closest we got was someone who cancelled an arranged visit twice then never responded again. Things are dire now - bathrooms not cleaned in two weeks, kitchen in three. We're back to eating takeaways. But there's no way I'm up to cleaning or cooking. Had my test today - several in for the same test, they had us up and down like musical chairs, so no rest. Really felt like I was going to pass out. Came home and slept, but still feel like utter crap. I feel like if we eat some normal food and I could live in a house that wasn't so dirty it was contributing to my illness, I could perhaps feel a bit better, but I don't have the energy to reach that stage.

to everyone exhausted and suffering today.

I'm in bed with a hot water bottle at my back, tough day pain wise, had a headache all day too, should really get off here and go to sleep. Tried to book a physio for the SI pain earliest is Monday. Meds not touching it just now.

Living - tbh, I never really had a problem with Fibro until last year. I was DX by total fluke - I didn't realise I wasn't supposed to be that sore!! I think I must have had flares before and certainly had periods before DX of being run down where I would rest for a couple of days then be okay, so I suppose these were flares and I was coping. Now, I just can't shake it. I know it's work. My building isn't very healthy and this makes it worse, plus I'm a teacher so it is a very full on job with a lot of pressure and a big workload. They are being really good with me, but I've been off a lot. I think I need a big chunk of time to get properly rested, but I have to get to the holidays in order to do this. I just hope I don't get beyond myself and have no choice but to stop like murmuration says - it just falls down.

Hope you got some sleep sweet .

Very down and very sore today, despite my usual cocodamol and naproxen I'm hurting so much, even the soles of my feet ache. Fallen out with DH too. He really just doesn't get it, he's super healthy and super fit, needs very little sleep.

Am off sick from my volunteer job too, shuffling around like a 90 year old. Why would anyone ever think you would chose this? That if you could you could just get up and get on with it?

Sorry for bringing down the thread feeling so useless and pathetic

Oh kitty :(
I do get it, honestly.
I am still paying for our weekend away. Feel awful...and am in pain.
Also got a sore throat AGAIN
How long should sore throats last for!?
Physio away and then we are away so will have had a long break.
I'm fed up and tired.
Ds1 off school with a sore throat/headache /cough thing 😖
They break up next week which means so do I...a week off sounds good but we are away so not very restful really.
I'm trying not to take too many painkillers - worried how many I'm taking tbh.
Also...not sure if I mentioned this...am considering having private bloods done for thyroid...that's it ts3 and ts4 which the NHS won't test for.
I am worried I'm borderline normal tsh so NHS won't do further tests.
ThoguhtS?

Thank you badders sometimes I think it's all in my head too

I would definitely pay for a blood test I think desperation detain doesn't it? I would love a MRI to check my pelvis to see if there is someone wrong or its "just" fibro (that I haven't even been diagnosed with yet)!!

Feel totally and utterly useless today

Hi am joking this thread s suffer ME and have had it since I was 15 now 27 be nice to hear other people's stories

Well it's not in Your head kitty that's for sure!
I will make an appt either next week or when we break up

Hello, I hope you don't mind me joining? I don't have an official diagnosis of Fibro but it has been mentioned twice at different appointments with different professionals. Just awaiting the results of yet another set of the same blood tests(inc Vitamin D this time) and hopefully I will have some idea of what is going on.

I have osteoarthritis in my hips but the Drs don't understand why because I'm only 37 and don't run . I have just spent about 3 hours a while reading back through the thread and there are so many things mentioned on here that I haven't even mentioned to the Dr e.g. feeling like I'm burning/itchy on warm days and late at night or freezing to the point I can't feel my hands and feet which is so painful at times that I can't walk properly, light sensitivity-worst time being opening the door to the postman one morning and literally not being able to see for the next 15 minutes because it was quite bright..my eyes felt like they were on fire, the thick feeling I have had for the past 8 years in the bottom of my throat as though something is stuck (no thyroid probs) which gets worse as the day goes on and drives me insane. I don't know whether to mention them or not incase the Dr thinks I'm making it up because they have mentioned Fibro!

The rheumologist said he would help me and a multi-disciplinary team would be the best way to go. He wrote a referral to physio, sent me for the blood tests mentioned above, ticked the box on the form for counselling and then discharged me.

Welcome okmytimetodoit

I've not been diagnosed either, I've sort of self diagnosed and the GP agreed with me although she thought it might be VitD deficiency. Have waited to see rheumatologist for ages now appt is next week.

I'm in agony with my pelvis today despite meds feels exactly like it did when I had SPD when I was pregnant. I'm still trying to keep up walking the dog for at least an hour a day but that hurts too even lying in the bath hurts and my bum has a load of padding round it lol.

Don't know if this pelvic pain is due to the fibro, if fibro is making it worse or its nothing to do with it. Can you tell my head is all over the place with it?

Hi ok . That is unfortunately the experience a lot of us have. Most rheumatologists lose interest once fibro comes up.

My GP has just rung to say my nerve conduction study showed carpal tunnel & gave me some options. The only problem is my symptoms were more cubital tunnel. Really bad elbow pain and numb little and ring fingers. So god knows what I've done there then. Will admit that I had a bit of a cry because my elbow pain is really getting me down this week and I thought it was going to be sorted. I think I could cope ok if it wasn't in both arms. Next time someone says I want putting in a bag and shaking up I might try and take them up on it

Sweetkitty have you thought about seeing a chiropractor or osteopath for the pelvic pain? The reason I mention it is that I had severe SPD from pregnancy number 1, 14 years ago and it's never gone away. I saw a chiropractor about 10 weeks ago as I was having pelvic pain - just like the SPD plus other pelvic pain, back pain, shoulder pain etc and was fed up of the doctor saying 'oh it's just Fibro'. I wanted to know if it really was Fibro or something else. The chiropractor immediately spotted that I had a twisted pelvis and the symphis pubic bones were grating against each other rather than sitting neatly in place. Treatment has helped ease this pain (the rest is all Fibro) - I wouldn't say it's gone completely but I can walk so much better than I could! I'm not saying this is the problem you have or that chiropractic or osteopathic treatment will help but I wonder if it's worth a consultation?

Yes my rheumatologist wasn't interested once she'd diagnosed Fibro and just sent me back to the GP I know I keep saying this but the lack of support for people with Fibro is appalling. I know they can't cure or do much more than give painkillers but good advice on pacing, exercise (as in what and more importantly how to!) etc would be so helpful.

I'm finally seeing the pain management group. It's offering the support I've mentioned above but only for 8 weeks, how can we learn everything in 8 weeks and what about the questions I'll have later? Who do I ask then? I have to say the leader and her volunteer leader (who also has chronic pain issues) have been very helpful. I wouldn't say I've learned much yet but just going over what I do know has been good. Speaking to people in person (rather than from behind a keyboard/pen) and being able to be honest about how I feel etc (rather than putting on a "I'm fine" face) has been the best part so far, it's been eye opening actually how much I do put on my "I'm fine" face in every day life

daisy there are fibro groups in some areas. I know there's one near me but unfortunately they meet when I'm at work. I can't for the life of me remember where I found that information though!

Hi all
I felt rather foolish earlier....
I've decided to try the gel insole again...but this time just the one shoe of the leg that is shorter.
So I have walked a lot today (for me) and I was getting really annoyed with the damn thing...it felt dreadful.
Then ingot home and realised I'd got the wrong one in
One I'd put the correct one in (left foot) it felt fine!
Sooo...
This is my current plan...
Go to see Dr next week and ask about private bloods for thyroid function
Start taking magnesium along with my menopace and vit d
I was asleep by 2pm today
I just seem to get to a point (usually about 4 pm) and just flake out
Dh is away tomorrow all day and then away mon-thurs next week with work. Sigh.
I have very mixed feelings wrt my fibro dx.
I think it's stopped drs from seeing the bigger picture....the glandular fever (which imo started it all), the me/cfs, the ibs...
I now know I have this biomechanical issue wrt my leg/knee/hip which I am trying to sort out. If I can then that it will take the pressure off my back and my two bulging discs...I hope.
Lots going on over the next few weeks...holidays, birthdays, dh away again in U.S., more holidays....
I'm tired just thinking about it Tbh...
Hope everyone manages a decent weekend.
Oh...and Tmi...I'm so constipAted I've taken a laxative! Fun times! 😱

Woah, my test knocked me out for the whole next day too. I really don't understand - there is no way what they gave me I could have possibly reacted to; it should have been completely inert. Maybe it was just the fasting/lack of water. But I could barely move on Thu and I took a morning and afternoon nap. No half-day of work for me.

Tried to catch up with work today and only just realised (while meditating! clearly not concentrating on what I was doing) that I left an important email unanswered. But I'm going to ignore it until Monday, as I don't have the brain space to figure out a reply. Will just have to apologise on Monday for the lateness. Brought home more takeaway. I miss cooking so much :(

ok, I totally get that feeling like you don't want to say too much. I feel like a complete hypochondriac when I note all the things wrong with me. I have no sense of reference - surely some of these are normal aches and pains and such. But then I can't tell what. For example, is it normal to regularly temporarily lose vision upon standing? I had assumed so, as people will say 'oh, headrush' and wave their hands about, but I'm starting to think that maybe most people don't actually go briefly blind. Dr's seem to ignore my constant complaints of pain, numbness, and tingling in my hands and feet. But when my arm went numb up to my elbow and stayed that way for about 30 min, my GP did say that was unusual and to note if it ever happened again. I wish I knew what were the important things so I could mention them and ignore the irrelevant bits, so there wasn't so much.

Oh, that reminds me of a ridiculous thought I had sometime last night! I found myself thinking what if I had retrained as a doctor and then I could be advocating for myself :) If I had started medical school 16 years ago back when my problems started, I could be a consultant by now! Even if it had been only 10 years ago since the really weird problems, I'd be nearly done with specialist training. Of course, I probably would have crashed and burned as a junior doctor (have a friend doing this now - it was a real shock seeing her after a few months of doctoring, she looked so thin and ill). But an amusing dream, nonetheless.

At the moment I'm taking vitamin B complex, a multivitamin, magnesium, viatmin D and carnitine.

Does anyone just feel made of glass like they can't get comfortable at all, if my knees touch it hurts, resting my elbows on my knees hurts?

Sorry to hear so many of you suffering and still feeling like hypochondriacs.

I'm booked in to see a physio next week would a chiropractor be better?

Re local groups, you can get some info here.

sweetkitty I assume the physio is on the NHS? If so, I'd try that first - I have seen a physio a few times over the last 14 1/2 years (so for SPD as well as Fibro) - if a few sessions doesn't help then maybe look at trying something else - assuming it's affordable obviously. I do wish I'd known that chiropractors could have helped with SPD issues earlier but the advice when I was pregnant was specialist physiotherapy (which I did try).

I did try local in-person and local FB Fibro groups - they didn't work for me (in fact the 1st one I attended I was not only the youngest person there but advice and comments on medication scared me witless!). I'm hoping this smaller group - just 9 of us ranging from 30-70 yrs - may work better for me.

I've wondered about trying a local support group but since i can no longer drive because of the fibro and live in the sticks i couldn't physically get there. I also really struggle with my anxiety in group situations. I once went to an anxiety support group - can you imagine a dozen people all with severe anxiety stuck in a waiting room together waiting for the meeting to start? There wasn't much eye contact!

Velvet - local groups often have a FB page now (or they do near me!) so you could give that a go first and then when you feel confident enough, go along to a meeting or a coffee time meet-up (ours did coffee meets at a local cafe for those who could attend and evening meets with a speaker or an exercise session suitable for people with Fibro etc). It's worth a go to see if it works for you? I'm not the best advert as I'm the most introverted person you'll probably ever meet so small talk really is not my forte! I'm hoping to give my small pain management group meet-ups ago though once we've moved on from the formal meetings. What I have noticed so far is that yes, I talk to people online or via letter (I have penpals with similar conditions) but in real life I do hide my "real" face and find it hard to discuss how things really are. Being able to actually say I have similar problems or admit how hard it is or whatever to a person actually in front of me was actually really good as I knew they understood and it's a different conversation to online/paper iyswim.

esme.com/resources/content/well-being-health-fitness/solo-moms-living-with-chronic-illness