Spooning into summer - life 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.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Ack, just dawned on me my specialist appointment is this week! I'm so worried I'll minimise and not use it appropriately. Any pointers?

Do you know how long the appointment will last? Some of them are terribly short.

Oh, I didn't think of that. No idea. I just have a start time.

Assume it might be short and get your top question in first! Sounds daft, but I started my last gynae appointment with with 'Do I or do I not have any signs of cancer?'

Number two question (after an answer that was a relief) was, 'So what is wrong with me and what do you recommend now?'

Ugh, but what is my top question? 'What the heck is wrong with me?'

I guess the main issue is that I've had unexplained fatigue for... 6 years now, and it severely impacts my life and work. So far blood tests have come back normal, although I have a known unspecified dysautonomia. What is the next thing to test?

I'm fairly sure things like lupus and MS have not been ruled out, and they stopped investigating the dysautonomia when they were able to treat it. I'm a bit worried he's going to want to stop treatment for that to investigate, which will create a massive dip in my capabilities.

What about asking exactly that?

And then saying your next two paragraphs. That seems to be the heart of the matter.

Must be driving you to distraction.

I know what you mean. I felt I'd 'wasted' my first rheumy appointment: they told me I had hypermobility syndrome and that I "just have to get used to living with a certain level of pain" and I was so shell-shocked I didn't ask anything at all... They didn't ask questions about anything other than my joints and (oddly) my sensitivity to local anaesthetics (poor), and I didn't think to tell them things that were, with hindsight, relevant.

I was determined not to repeat the mistake when I was re-referred, so I made a list of questions. I wrote it several times, and sorted them into related questions, so I could really think through what I was worried about, and what bothered me most. I told the rheumy I had 'quite a lot of questions', and the list really helped, because (a) I didn't forget anything, and (b) he seemed to feel obliged to answer them all! In the end, I think I got much longer than normal - 40 minutes - and I got some very useful referrals on to orthopaedic surgery for a hip replacement, occupational therapy and the orthotics dept. These have finally given me practical support rather than just being told to be brave . So I'd really recommend a list!

Okay, so it seemed to go okay. I didn't get to speak to the Dr I was referred to, but to a registrar that talked about discussing things with her 'senior doctor', which I suppose must be him. But she took a really good history and seemed very nice.

Things are slow though. She sent me down for blood tests and a chest X-ray, and has ordered some cardiology tests that I should get letters about, and said to come back for another appointment in 3 months and they'll look at the results and go on from there. It seems awful long, but I guess it took 6 months just to get this one, and there has be time for the echocardiogram and 24hr-ECG and whatever else it was she said to get done.

She said that my symptoms weren't pointing to anything in particular, so they are just going to have to test an array of stuff and let that narrow the search.

So I'm trying to be happy that I'm now 'in the system' and someone is paying attention.

Hi Murmuration. Glad you were listened to properly. That's a good first step - and good the DR was open minded. My latest cardiology appointment got a lot of things plane wrong, but fortunately the GP will know it! I've had most of the cardiac and blood tests and apart from confirming tachycardia when up and about (POTS) it did not show anything up. Ok I also have low cortisol but a test with the synthetic stimulating stuff showed I could make it - just don't. Actually just knowing that the POTS was part of the fatigue has been helpful in that I can take specific steps to help. Its been several years since I started on this path, and probably 4 before the POTS was demonstrated. In deed I think since managing the POTS I almost feel I don't have it anymore - although it is always there waiting to 'get' me if I don't have time to drink!
Hope some helpful treatment comes along soon, despite the wait.

www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome-research

Also, we still really need your votes here to win £2000 for ME Research.

Hello! I'm still alive :)
Guess what though... Still not heard anything from PIP!
I have however, had a care plan approved by the council last week. Yay!

Will read through and catch up properly asap, hope everyone has an abundance of spoons x

[[http://news.ifr.ac.uk/2014/03/crowdsourcing-me-research/
Crowdsourcing raises vital funds for ME research]]

vote until midnight to keep Invest in ME research in 1st place to win £2K

Beyond I've heard PIP is taking ages. What a pain! However great news about the care plan. I used to work in a job where we designed creative support plans for service users and always had success in getting them approved, so if you need any help at any point? Are you getting a personal budget?

How is everyone else?

^ I mean obviously it is already approved but if you want to make any changes or anything, I'm happy to offer any advice.

Can I ask, to murmuration and others, how easy or hard is it for you to access the results of your various tests?

I had a surgical biopsy in January, for example, and they said they would call me in for the results within two weeks - and they didn't. After three weeks had gone by, I was left chasing up on the phone for the best part of a day. This kind of thing has been common during the past year.

I've recently been dx with ms. Anyone else new to the journey?

Hi Highwayrat and welcome! Sorry to hear you have MS but I guess its a relief to get a diagnosis. How are you feeling? I know their are others with MS in MN although I don't know if any are on this thread. We are a mixed bunch - some without diagnosis, but I'm sure you are very welcome!
Linerunner I asked for a copy of blood test results ( to take to an appointment at the hospital) and was just handed them by the receptionist. I don't know about biopsy results but you could write to whoever did the biopsy and just ask for a written copy. You may need to fill in a special form.

there not their!

Candy, it was all being sorted by the council, but DH has just had an email this lunchtime that they can't work around his shifts so will be doing direct payments instead. Someone is coming out to see us tomorrow.

Direct payments are great, so much more flexible!

Invest in ME won the £2000! Thank you to everyone that voted!

Not been well but am posting to bump this for a different thread. Hope everyone. Is ok.

Grockle! Lovely to hear you but so sorry you have been unwell. Hope you are feeling better.

Re-marking place... Again

Things have been mostly ok except I had a bit of a flare up this past week with epic headaches/exhaustion/dizziness. Very nearly didn't make it through work on a couple of shifts.

Bizarrely I am actually going to miss the school run during the Easter holidays. WTF?!? If anyone had said that to me even two months ago I would've laughed at them. But the walking is really helping to loosen me up. It's the other activities (stuff like cooking, laundry, bathing DCs... and sadly, some tasks at work :() that are causing pain.

I think I'm going to try and get out for a little while each day with the DCs during the holidays. For the first time I actually WANT to. It's a huge change. I am still nervous about it though, I am so used to only being able to stay inside with the DCs. It will just be a walk (with them on bikes or scooters) - don't think I could handle the park just yet as it's a lot further than the school.

Not the only change either. Have dropped a couple of dress sizes :) still a long way to go though. I think I might be ready for some other form of exercise too, but I'm a bit scared to take anything else on I have no idea how to exercise safely and gently. To think I used to really love the gym when I was younger. :( Don't get me wrong I've always been overweight/obese but I was actually reasonably fit in the past. Anyway, swimming is an absolute no ATM due to dizziness, there is a tai chi class (targeted at disabled people) in town that I'm considering or maybe I could do some kind of yoga or Pilates DVD at home? It still feels like a MASSIVE step though.

Hi everyone :)

Just checking in because it's been a while.

Had to tell my new job about my fibro two weeks in. It's about a two hour commute, door to door, and it was killing me. I didn't want to appear lazy. We've negotiated on how much I need to travel, and I'm hoping that we keep the arrangement.

I'm looking visibly tired, though. The days are so long - I'm out of the house for twelve hours.

I guess I'm holding up as well as can be expected! I hope you are all doing well, too.