CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

How are you, Badders?
Hope you'very had lots of fluid & rest (of course! don't mean to mother you) to encourage healing. Good luck for the next few days

A bit better thank you but throat still hurts :(

....do I've just had a choc ice

Hi I hope you don't mind me crashing your thread. I have M.E.

Have you all heard about the Millions Missing protest happening on 25th May? Apologies if you have already.
There are going to be protests all over the world (asking for more money into M.E research). If you are too ill to physically attend, you can send shoes in your place. The idea is to show how M.E sufferers are missing from their lives and from society because of being stuck in bed.

Details are here With a bit of luck there will be hundreds of pairs of shoes on the day. I just popped onto amazon and ordered a pair for a few pounds. They'll be used afterwards in other demonstrations or sent to charity. I really hope some of you on here will want to take part. It feels like there is so much momentum in the M.E community at the moment and so much research going on.

Thank you!

How is everyone doing?

Haven't posted in so long this fell off TIO. Exhausted at work and I've been anxious about things and checking my emails during my afternoon off, which is not helpful at all. I need to learn to control this anxiety as it interferes with my ability to rest.

Hi Lumpy. It is possible that the two are connected. I think a lot of us spent years thinking we were hypochondriacs because of the endless list of things that we seemed to suffer from, and it's only when the dots finally get joined you realise it has been one thing all along.

I have fibromyalgia and also have a history of depression and anxiety. I didn't know i had fibro when my mental health was at its worst, but now it is clear that it is another manifestation of the same illness. Obviously i can't say whether the same is true for you and don't know what your mh condition is, but it may be helpful to be aware that it is a possibility.

However, they have already discovered a genetic mutation that may have the potential to be the culprit: a mutation that occurs in 1 of every 500 people in the European general population.......Fluge et al. believe that the genetic mutations they uncover will have a direct effect on which symptoms predominate in each family.

Feeling really down. Went to Mum's group yesterday and had idea to eat out with DD after - as we usually get back ~2pm after the bus rides and I'm hungry and too exhuasted to cook. Had a lovely time and really enjoyed meal with DD. Not sure if that was the problem or just going out at all - been barely capable all day today, bumping into things, barely able to stand, took two 2 hr naps, and I can still barely function. Was meant to clean today as I've not been managing during week and haven't - kitchen now not cleaned in over 2 weeks. But clearly not capable. I just want to cry. I hate not being able to do the bare minimum. Long day at work tomorrow, and again on Tue. Now bizarrely looking foward to hospital test on Wed as a 'break' - it's one where they won't let me eat all day, though, and that really knocks me for a loop. But at least I'm hoping I can lie down most of the day. And I've planned working from home on Thu, but may end up having to take it off. I hate this evidence that I'm so much worse than I was just a year ago. And scared about future if this continues. I need to get back to stage where I can work and do minimum stuff - and I really want to be able to do things like go to a Mum's group and speak to people, but it looks like I may have to cut such things :(

So sorry you are so down just now murmuration I, too, am noticing a huge decline year after year and it is bloody terrifying to think where I will be 10, even 5, years from now

Found you all again this dropped off TIO feeling really down tonight. Was speaking to DH just before bedtime and he was saying he'll be glad when I've had my hospital appt. he thinks they will give me a tablet and I'll be "fixed"

In so much pain tonight slept for 12 hours last night as well. Pelvis very sore radiating into my buttocks and hips. Knees and upper back also very sore.

Sorry not very helpful tonught

I think a few of us are going through it.

I've triggered absence monitoring at work so have to try and get in, but had the bloody depo jab to try and give myself a rest from my periods (which are awful) and have subsequently been bleeding moderately for over a fortnight now. This has made it hard to sleep so it has flared my Fibro. I know I'm sinking, I can feel it happening, and yet I'm into work today when all I want to do is sleep. It's flaring depressive feelings too as, like others have said, I feel like a total waste of space.

Dr last week said it would settle. Clearly it hasn't, so going back again today.

I'm scared to death I'll lose my job. We need my money and I'm main earner. Even if I qualified for PIP, it would be nowhere near what I currently earn. I am still FT so could maybe drop a day, but this won't be feasible at school for another year yet.

Sigh. Sigh. Sigh.

I'm also getting the shakes - tremors in my hands. Is this a fibro symptom that other people get?

Thanks, alice - I'm holding out hope for stories I hear about people who get better, and hoping there is a cyclic thing and it won't just keep declining. As I can't face the thought I'm on a certain downward trajectory.

Oh, sweet, it must be hard when your DH doesn't understand. At least mine does, having even worse CFS/ME himself (although I think sometime's there a bit of 'but you're the healthy one' and 'that's my disease' going on - but that's a different thing).

kinky - I'm the main earner too; at the moment sole earner, as DH is currently in the building phase of his business - from talking with others in the field, 2-3 years to break even is the expectation. It really scares me that we'll definitely need my income for the coming 5 years or so, and what if I can't manage it? Going PT is a farce in my field; I'd need to go to 50-60% before seeing lowered expectations, and we can't take that kind of income drop. And I've looked at the PIP calculators - DH wouldn't even qualify now, much less me, and no way that'd pay our mortgage anyway.

Spent last night googling sacroiliac joint pain as my pelvis is in agony. When I was pregnant x 4 I had terrible PGP my SI joints were the worst. I believe it's never fully went away and maybe the fibro is triggering it or maybe I don't have fibro just SI pain. If I touch the bones at the bottom of my back/top of pelvis they are every sore and tender. The pain radiates across my pelvis into my buttocks and down my legs. Even things like when improving coming off the accerelator onto the brake is painful. But then I also have very painful knees and upper back and sometimes arms.

Argh!!! Whoever said they feel like a waste of space sums me up.

Sweetkitty - i get exactly that, and it was written off as sciatica for years. It's a common fibro problem. Don't know if you read my reply to you above about chest pains too, but i really can sympathise. I also get intense pain in the upper back/neck/shoulders, pain in lower arms and wrists (sometimes upper arms). At the moment i have the worst pain in my lower legs - i feel like my shins are going to splinter and can't support my weight.

The best thing for the sacroiliac pain (for me at least) is heat, so hot water bottle on the most sore bit, and then move it around the different pain centres. The other thing is massage - it can hurt like hell bet it can really relieve the pain - if you have someone willing to massage your buttocks and your neighbours don't mind you hollering! Some gentle yoga stretches on a regular basis can help keep it at bay, though you probably won't manage that when it's at it's worst.

Poor you velvetgreen

I guess I'm just mulling things over in my brain still got over a week until I see the rheumatologist. The SI pain is the same as when I was pregnant (def not pregnant lol) do you think fibro kind of "picks" on weak parts of your body? I've had 6 cocodamol, a diclofenac and 2 ibuprofen today and still in a load of pain.

This time last year I was building up to running 10K now walking is painful still make myself walk the dog every day though.

Hope everyone else is doing ok

I've had continued pubis symphis and sacroilliac pain since pregnancy. It's gotten better (I've been walking unaided for almost 2 years now!), but still comes in waves. I'm wondering if it's linked to the time of the month? (on the mini-pill, so can't properly tell). I'm pretty good at identifiying actuallly which joint is the problem now. I did dislocate a scaroilliac joint twice post-pregnancy, and have been very careful since then. A manipulative physiotherapist or an osteopath can be helpful - I paid for 2-3 private physio visits after each dislocation.

Made it through work today, although felt very bad taking DD home from nursery (we walk and take bus). DH was lovely and cooked dinner, while I took care of the cat's box and DD fed both the cat and the bird! I'm alternately proud at how helpful she is, and guilty that she has to be.

When i was pregnant pretty much all my symptoms disappeared, including the sacroilliac pain/sciatica, which was curious as had i had 'just' sciatica the expectation was that it would get worse. That makes me think there is more than likely a hormonal component to it, and it is apparently well recorded that some people with fibro have relief from their symptoms during pregnancy. I can't remember what the statistics are on that, but it was a minority of sufferers, so if that didn't happen for you it wouldn't mean that it wasn't fibro.

I'm also quite swayed by the research that links fibro to excessive levels of pain neurotransmitters, which would suggest that if you have what would otherwise be a mild discomfort or misalignment, that it becomes severe and debilitating, so yes, i do think it picks on your weak points.It would also explain why pain medication is not very effective.

I'm actually having a good day today - that's been a rare thing lately!

I've had to call in sick. Feeling like a failure this morning .

Kinky dorito - you are not a failure you are battling a very painful debilitating illness, go back to bed and rest xxx

Very interesting re the SI pain I was in total agony in my pregnancies but then it went. The pain I have just now is so like it, if I touch my lower back/pelvis it's so raw and sore, could be a fibro pressure point???

There's a pressure point towards the top of your hipbone, slightly towards your back, and another in your buttock just above the sit bone. I don't have active pain in that area right now but if i press those points they hurt like hell.

I also get pain at the si joint, but i find that if i start having a prod about that the pain is radiating from the points rather than from the joint, and dealing with the pressure point pain also relieves the SI pain. That makes me think it is a referred pain, rather than there being something wrong with my back - i've had loads of investigations and there's nothing obviously wrong in terms of disc damage.

And Kinky - you are absolutely not a failure. Be kind to yourself

Kinky you are not a failure! You're doing your best, that's all anyone can expect - including you!

So sorry for all those suffering
I'm just exhausted.
No other word for it.
Bad joint pains (but physio on hols for 2 weeks then I'm on hols)
And I'm on the run up to my period which is usually pretty unpleasant.
Went away at the weekend as it was our wedding anniversary. I even had a glass of prosecco (don't really drink due to the ME) and I feel like I could sleep for a week now.
Aside from looking after the DC, work and trying to keep the house clean that's it. That's all I do. I'm usually in bed by 7/8 and don't get up til 7. At the weekend I often nap too.
Ds1 has a nasty cold/cough but he's asthmatic so always suffers.
Ds2 had only just got rid of his.
I'm still suffering from a really sore throat...been weeks now.
I was thinking about going back to the Dr but...what can they do?
Tried hrt...nightmare.
Got painkillers
Having physio
I feel quite low today.
Kinky....you are NOT a failure, you are ill! - how angry and upset you would be if a friend or loved one said that to you about themselves! Take care X