Spoonies... friendly support for anyone with chronic pain & fatigue

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

Spoon Theory Here

Old thread

New dribble of news, aparently the thoracic surgeon took one look at him and said 'I see no signs of eds, you obviously don't have it' and talked about potentially marfans instead (which the whole family was tested for and was absolutely ruled out many many years ago). My mother told me this with glee.

So a surgeon who's not a specialist in any way at eds has confirmed what they want to believe, and quite possibly his recovery will be confused by this as eds people heal so differently :(

Jesus, who would be so fucking disturbed that they'd rather he died than face up to a factual diagnosis?

I can't deal with this at all.

Just saying hello, after being kindly given a link to this thread.

MiscellaneousAssotment, what is wrong with these people?

www.investinme.org/Article-620%20True%20Battle%20With%20CFS.htm

Happy new year all! And may 2015 bring health and happiness to all of us

I have had CFS for 2.5 years and have tried various treatments including some experimental ones under the hospital. But I have had sustained improvement for about 2 months now with Chinese herbs prescribed by my acupuncturist. I feel so much better. If anyone wants more details let me know.

Happy new year!
Wishing everyone a year filled with lots and lots of spoons!

Looks like I'm heading to A&E on a Saturday night. Subluxed my shoulder, can't get it to go all the way back in and although I can use my arm, it's getting pins and needles and very sore :(

Misc I just saw on another thread that your father has died. I'm so sorry.

I didn't want to block up this thread again but yes. Tragedy has struck again and I'm not sure how I'm going to carry on without him.

So sorry misc

Miscellaneous I am so sorry flowers
Mooming how is your shoulder now?
Probyou, Welcome to Grockles thread.
Just popping in to wish everyone a happy new year!

I hurt so much. I'm in hell.

Eventually got seen by A&E doctors. 5 minute job to pop it back in, but because it was 24 hours by the time I was seen, I've strained and pulled the muscles, so I'm really struggling with the pain.

My joints are getting worse and worse, I subluxate constantly :( I'm only 20 but I feel so much older. I struggle to pick DD up sometimes :(

Miscellaneous ((Hugs))
Moomin have you subluxed that shoulder before? Sorry you are struggling with the pain and I hope it recovers quickly. I am still struggling with my (fractured) wrist which should have healed by now. Still I am getting better at doing things left handed.

Hi, I'm a regular mnetter but have name changed to join this thread. I had a blood test just before Christmas and it's come back with high DNA autoantibodies (?) so I've been referred to a rheumatologist as the GP thinks I might have lupus.

I've had lots of symptoms for several years- depression, extreme fatigue, muscle pain, anxiety, skin problems etc in phases with other phases if not being too bad and am totally fed up of being told it's all psychosomatic. So in one way it would be good if they do say it's lupus as at least there will be a reason why if feel like this but at the same time it's basically a life sentence of pain and medical problems as far as I can see from my brief googling.

And if they don't diagnose lupus then I'm stuck with all these horrible symptoms but with no diagnosed reason for it.

I'm currently in bed having taken a full dose of paracetamol and ibuprofen and I HURT all over, like the worst flu ever. My brain feels like it's full of cotton wool. I have a superking size bed with a decent mattress and lovely bedding but I spend the night trying to find any position that doesn't hurt and struggle to get any sleep unless I take zopiclone. I have an eight year old who throws her arms around me to hug me and it hurts so much even to be touched.

I work 35 hours a week and am finding it really hard- we only cope by having a cleaner, tumble drying everything and eating lots of pre prepared food. I'm worried about what a lupus diagnosis would mean- will I get worse? Will I be able to carry on working? DH works so I don't think I'd get any benefits if I couldn't work. I already feel that the kids are missing out because I'm too tired and in too much pain to do things at the weekends. DH does lots but he works long hours and is tired too.

Sorry- I don't even know if I'm "allowed" to post here until I actually get a diagnosis or not. Just really struggling with what this might mean.. And what happens if I don't have lupus but still feel awful.

Hi Lupylu and you are welcome, - although I am sorry you are in pain. I too had a raised ANA (and other signs of an autoimmune condition) but wasn't diagnosed with Lupus, in the end but CFS, so I can't tell you much about living with Lupus. However I did read that Lupus can get better later in life, and if you get a diagnosis then treatment can be directed and helpful. If you get a diagnosis you may need adjustments made by you employer to help you - such as changing the lighting in the room you work if that is causing flare ups. You may also be able to get a support allowance I think its called a personal independence plan (PIP), although it is very hard to get. I am doing somewhat better than the early years. I know what you mean about worrying the kids miss out. I have had to learn to not to feel guilty and also find ways around that - although frankly DH has also taken on far more especially of the energetic things like taking ds out walking/exploring castles etc.
It may help to reduce your working hours if you can. If there is a money advice unit locally they may have a dedicated staff member for helping with PIP claims if you think you might qualify - possibly with a long wait so worth getting in the queue perhaps. PIPs have replaced DLA recently with people needing to swop from the old to the new, so I know our local advisor is swamped!
It sounds like you are part way through finding out what is causing your ill health. Seeing a rheumatologist is a good starting point. Don't forget to ask about pain control (never occurred to me). Lack of sleep due to night pain can aggravate many conditions.
There are many people on this thread (and its for runners in general health) with differing conditions, including Lupus. Its often quiet on here so it may be a while for others to join in.
Hope the rheumatologist gets to the bottom of your symptoms and more importantly can help you get more well.

I’m feeling very sad and not coping very well with the fatigue and pain that comes with primary biliary cirrhosis. I posted under chat tonight:

www.mumsnet.com/Talk/_chat/2280601-Just-want-to-chat-really-anyone-else-struggling-with-illness?

I was kindly ushered here by BeyondDoesBootcamp

I’ve namechanged because I don’t want to be self pitying all the time! But I’m a bit down at the moment and would like to join you all.

Maggiso- do you think that your diagnosis is accurate? I thought that the ANA test plus other symptoms were how they diagnose lupus? What made the drs think that yours was CFS instead?

I'm really stressed that I'll get a wrong diagnosis because my biggest problem to date has been not being taken seriously regarding how bad I feel, particularly as I have a long history or on/off depression so everything seems to therefore be seen as psychosomatic. Clearly if you have a mental illness you can't also have a physical one!

Will update when I've seen the rheumatologist. My pain levels are thankfully much better since Monday, still some mild muscle pain and chest pain but nothing like what I had at the weekend. It's the uncertainty of how bad or good it's going to be that makes it difficult with work and the kids- I'm finding it so hard to plan anything as I don't know if I'm going to be fine or feel awful. And my job is quite active (some sitting too) so I'm having to go and hide somewhere when I need a few minutes break. At least if I get a diagnosis I can talk to them and hopefully they will be more understanding if I need it have a quieter day.

Thanks for replying, I really appreciate it.

Lupylu, as I understand it, a positive ANA is only a sign that antibodies are there and not specific to autoimmune disorders or Lupus. At the time I did wonder, but now I accept that CFS is the 'we've ruled out all the conditions we have tests for' diagnosis!! There are many other more specific blood tests done for Lupus and I think it is the overall picture plus repeated positives that lead to a diagnosis. My ANA dropped at the second test. That are quite a lot of conditions that are not well understood yet.
Glad to hear you are feeling somewhat better. Its difficult not to worry I know. Planning is very tricky. Hopefully the rheumatologist will rule out lots of things so at least you will know what you haven't got. The good thing with CFS is there is usually a tendency to improvement. I am so much better now than 5 years ago.
GriffinSaver welcome, but I am sorry you are ill enough to join us. Guilt at not being able to be the active busy Mum I thought my son deserved was really awful for me too. Its a common theme for us all. You sound a lovely Mum, and I bet you do an excellent job despite the ill health. I started to manage better once I reduced my working hours (DH took on extra) - but that may not be possible for you- but also my standards. I would like a sparkling neat house but it really does not matter. Pity parties are fine by the way!

Hey all. Dropped on my tio, posting quickly to remind myself to catch up properly tomorrow whenim not so hanging. Been up since 6! :(

for you all xx

I think I may have posted this before but I'm not sure. This is from a blogger, no idea what his medical quals are to interpret this stuff, but you can look up the original research papers.

The finding last year that autoantibodies to the adrenergic receptors found on endothelial cells are present in postural orthostatic tachycardia syndrome (POTS) suggested an autoimmune process was knocking out one group of POTS patients. Now Fluge/Mella appear to be proposing that a similar autoimmune process is messing up the blood vessels and producing the sympathetic nervous system activation in ME/CFS. If that’s so Rituximab’s efficacy could lie in its ability to restore proper blood flows (and presumably blood volume) to ME/CFS patients allowing them to exercise, think, digest, etc. as healthy people do. This is a hypothesis that is pregnant with possibilities.

Fibromyalgia patients should note that Rice has found evidence of small blood vessel dysfunction in the hands that may also be impeding normal blood flows throughout the body.

Hi all. I haven't been here in a while. So sorry misc How are you doing?

Welcome lupylu - yes, you're definitely welcome! I'm another struggling to get a diagnosis. How are things going?

I can't remember if I said, but my MRI came back clear except for a white spot "within normal limits", whatever that means. I finally got to the see the CFS nurse. He said he didn't think I had ME, but he wouldn't be able to tell until he did a full evaluation in March. I can't really tell if he considers CFS and ME to be different things? I thought they were the same. Makes me feel a bit at a loss, if I don't have anything they can measure, and if I don't have ME (CFS?), then what is wrong with me? I'm pretty sure I'm not 'normal' :(

I need to make an appointment with the GP and find out where to go next. But, I've just been struggling to make it through daily life: I got a flu-like illness (I've had the jab, but I hear that it wasn't that good this year; they mis-guessed the strains) in mid-Dec and basically lay down for the first two weeks of my extra-long (3 week) Xmas holiday. We then took a short trip to visit friends -- I felt fine for that, but I exhuasted myself and lay down until work on Monday, including skipping our monthly weekend Mum/baby/tot group. Then I got a cold, which I had on and off for two weeks, and then weekend before last got a second flu-like illness. This time I couldn't lie down for two weeks :( I'm still suffering from that, and Tuesday I picked up a stomach bug from DD.

I'm working as much as I can from home in bed, but there's a lot that I need to be present for. A massive amount of things aren't getting done at home: DD's clean laundry is all in baskets, I haven't cooked a real meal in ages (we're living off take-away and randomly-scraped together items), recycling is scattered throughout the house, etc. At least we have a cleaner! Otherwise we'd be living in filfth.

I'm feeling really guilty about work, as once again I'm doing the bare minimum. I need to arrange a meeting with my mentor, with whom I hope to broach an idea of some flexi-working, in particular taking an afternoon off a week, if I make up the hours by working slightly longer other days. If he thinks it's reasonable, we can bring it up with my line manager. I think this will help me make it through the week. But as I'm doing the bare minimum, I don't have any energy for extra meetings!

There is a reddit with Dr Hornig today about ME/CFS

Hi All. I'm not a parent yet (ttc) but i do have lupus. This thread has come at a perfect time for me. Yesterday i got an arsey email about not having done something. I explained the reason - the physical nature of it means i can't do it alone and the person who was going to help me has broken her ankle. But i still feel like a failure and had a very down day. I'm 28, i have hypothyroidism too, and i work part time.

Part time was the best decision ever. But it also annoys me. One person seemed to think i was lazy, as she has two under 5 and worked more hours. It was really upsetting that an actual friend just didn't think it through. As if i like being poor! As if i enjoy trying to summon the energy to push around a vacuum cleaner! No, i work part time so i can walk. So i can undress myself, or so i can pick up a mug without its weight causing me to drop it in pain.

Both events make me wonder... Do i need to "play it up", mood wise, so people remember I'm sick? It seems if i am cheerful and amicable all the time then people feel misled.

Welcome honey! Sorry you are having a bad time :(

I know what you mean -- even with DH who knows everything I often feel that I have to constantly remind him that actually, you know, I feel bad, otherwise he seems to assume I'm great. And I hate doing that, as I feel like I'm complaining all the time.

I'm really struggling at work and wondering how much longer I can keep up full time. Although as I'm still recovering from the flu, I haven't done any meetings with people at work or gone to the GP or anything. And as I'm still recovering from the flu, I don't know how representative these last few months have been, either!