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Spooning into summer - life with chronic pain & fatigue.

(1000 Posts)
Grockle Sun 14-Jul-13 07:58:50

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

OddSockBox Sun 21-Jul-13 12:28:19

New poster on this thread. I have chronic pain in my lower back.

Today's dilemma is the coming weekend when there's a family wedding and I don't think I can handle all the activities planned, but there's a lot of pressure on me to. I don't know whether to just "suck it up".

Solo Sun 21-Jul-13 12:32:05

Hi all. How are you doing?

I'm still in bed; I feel like I haven't slept in weeks...

Went back to GP on Friday and he's certificated me for 2 weeks, but that goes into my 2 weeks leave and I'm not sure where I stand with that as I know you can't have leave when you are off sick. I think I'll have to ask him to cert me for longer as I come back directly onto nights from leave. Can't leave them in limbo for nights. Bloody hell! I'm fed up sad

OddSockBox Sun 21-Jul-13 12:32:31

For the people talking about TENS I have some info. Most TENS machines you see in the chemist etc just do 'High TENS'. For chronic pain Lo-TENS is better.

www.painclinic.org/treatment-tens.htm explains it more. Lo-TENS produces endorphins to block the pain. You have to get the type of machine that allows you to change the settings to the ones in the link. Again I think I got mine from Amazon. The first came from Physiomed but kept falling apart.

Solo Sun 21-Jul-13 12:33:35

Oh and I go on 'holiday' on Friday next and ATOS have given me an appointment on......... Friday! hmm

magso Sun 21-Jul-13 13:54:48

Welcome Oddsockbox, and thank you for the helpful Tens link. Mine seems to be a mixed burst type by the sound of it.
Its always hard to know what to do with occasions. If you want to go then could you go for the actual service part, then depending on timings rest before the meal then skip (most of the)the evening part? I am assuming others could look after children. Is there any where you could rest - such as a relatives room or hotel lounge if you are not staying overnight.
Hi Solo, I've had a lazy morning too. Dh has taken Ds out while I get started ( very slowly) on the chaos that ds leaves! Atos on Friday! Will you be able to fit it all in or have to reschedule one or the other? We often start our journey to our holiday location(France) on a Friday night, so ds is physically tired enough to cope with the start of the journey and tunnel crossing stopping overnight part way. I don't know what happens with sick leave and holiday overlapping. I think the GP can only sign off for 2 weeks (or is that hospitals?) at a time, so maybe extend the sick note just before you go if you think you are unlikely to be fit for nights on your return from holiday. Certainly worth giving GP a ring to sort it out.

Solo Sun 21-Jul-13 14:19:37

We are meant to be leaving for hols on Fri morning ~ early! <eek>
I will have to reschedule the meeting and will phone line manager for advice re the cert. Bloody more stress and worry I don't need.

crashdoll Sun 21-Jul-13 15:44:23

Afternoon all. thanks for those having a rough day. We need a 'spoons' emoticon! I went to the party in the end. I had a good time but there weren't enough chairs, so I stood a lot. My hip is really feeling the pressure today and my feet are swollen.

Those of you with joint/bone conditions, do you find TENS machines make any difference? I use it for general aches and pains (of which I get many due to the bad way I walk) but for my 'normal' pain, it does nothing.

OddBox I tend to save up spoons for these sorts of events and suck it up. I do cave a lot to family pressure, especially where older relatives are concerned but I have a major guilt complex. blush Sometimes, you can only really decide on the day or half way through. What sorts of things will you be expected to do?

OddSockBox Sun 21-Jul-13 16:28:05

crashdoll Problem is it being the whole weekend - from fri lunch to sunday night. Travelling - 1.5 hours car (passenger), then train 1 hour, then sitting around on painful chairs, then train back, then socialising, then next day wedding where there will be chairs but I'm not sure what like plus dancing the usual, then next day long car journey again. The Friday part's been sprung on me rather and I'm getting a guilt trip about it for saying I might not be going to that bit.

belleshell Sun 21-Jul-13 19:23:05

Hi All, ive not been AWOL but just tired busy and too hot, the cloud this weekend has been heaven sent apart we have been camping so I ended up with hot water bottle last night and 2 sleeping bags.........I hate my dodgey thermostat!!!!

Oddsock, I have to take rest days following any kind of event, ie im off tomorrow cos we have been camping which exhausts me beyond belief but if I don't go I don't socialise, I do actually do less when camping( no cleaning ironing shopping entertaining kids!!!) but the social side kills me...........

as for the heat.....omg,( solo are you high security??) we cant take any spare uniform, its an old Victorian building, no air con ... I get clammy from 7.30 am and just don't cool down..........its awful, my uniform clings, I feel sick and my lead suit feel like it has a lead suit on too!!!

spoons and a cooler night to you all xx

Solo Sun 21-Jul-13 23:18:27

No, not high security, an old Victorian building though with around 18" thick walls (like old storage heaters; they heat up and hold the heat) and all wearing wool trousers! it's torture sad
I agree about the cloudy Saturday...it felt like...it was bliss!

yegodsandlittlefishes Sun 21-Jul-13 23:39:59

I have been having quite a bit of joint pain lately. In the past, I've found pilates, Wii fit exercises and walking helps, to build up muscle strength and improve posture. Losing weight helped, but since giving up a cleaning job and starting on thyroxine, I have put some weight back on. I rub ibuprofen gel into my joints at night, to get to sleep, and I try low dose asparin. If it gets to the point where it is hard to stand up, I have a rest day or take nurofen.

Grockle Mon 22-Jul-13 02:01:42

Hello...hoping everybody is on the mend. Welcome oddsockbox.

Katymac, that sounds nasty sad & gallifrey, hopefully you will find a really good GP when you move.

Solo, what a nightmare with ATOS!

Matilda, our OH just changed from ATOS to someone no better. And work are not obliged to do anything they say and they haven't!

I'm currently on tramadol, amitriptyline, gabapentine & mirtazipine. None of them help. How can I still be in pain? What are my other options? WHat might stop the pain & faitgue? I'm not depressed or suicidal but I don't want to live like this. I can't.

yegodsandlittlefishes Mon 22-Jul-13 06:53:08

Grockle, have you tried (or would you consider trying) acupuncture? I've heard it can work wonders for some people.

crashdoll Mon 22-Jul-13 07:46:57

Grockle Are you in any sort of therapy? I do have a history of MH problems but they were exacerbated by my condition, so I've returned to therapy. It can be hugely cathartic just to talk and get it out. It won't help the pain as such but may help you to manage it on an emotional level? thanks

Solo Mon 22-Jul-13 09:37:37

Yeo I was just about to suggest acupuncture. I went to a Japanese acupuncturist/herbalist who had had many successes with patients suffering ME (to the point of cure). Sadly, I was not one of them and had her stumped, but it works for a lot of people and many use it for pain relief. Just find one that is recommended by someone you trust.

Solo Mon 22-Jul-13 09:39:03

Yegods not yeo hmm. I don't know how many blunders I made typing that out and putting it right before posting blush sorry!

OddSockBox Mon 22-Jul-13 15:44:12

Grockle are you under a pain management clinic? I am at the moment and finding the helpful things I've learnt from it is that for me stress and pain are linked, so I'm learning relaxation techniques. And also it's helping me with pacing myself/goal setting. I'm thinking of looking into some counselling as well when I've done that just to talk it all over. It's been a big shock to my life.

Matildathecat Mon 22-Jul-13 16:06:13

Hello to all, hope you are bearing up in the heat. Reading some of your posts makes me feel so relieved not to be working. Such a pressure for you all.

Solo, sorry I don't know your story, is th ATOS interview in relation to your inn health retirement ?

Grockle, your pain sound horrendous, are you under a pain clinic? I can't function at all if I take tramadol but it does work. Am so used to all the others I feel fairly normal though do forget things a lot. Hydro type excercise and relaxation are great but still don't help in the long term.

Grockle Mon 22-Jul-13 22:08:05

Not tried acupuncture, no. I don't know how to find someone good. I do have a hypnotherapy session booked in a couple of weeks and then an assessment with a private practice who treat FMS through nutrition & supplements - they were highly recommended by a friend but cost an arm & a leg.

Crash, I am not in any therapy - I can see how it might help though. And I'm not under a pain clinic either, just a GP who tries to be supportive but is openly exasperated

Solo Tue 23-Jul-13 00:06:25

Matilda no, it's just the occupational health that my work employ. Because I've had/am having sick time, I get sent there.

gallifrey Tue 23-Jul-13 13:39:30

Hi everyone, thank you to everyone that commented/wished me luck re my last post.

Yesterday in light of my 'I don't want to be on tramadol for ever' thing I didn't take any of my medication at all.

I am on tramadol, naproxen, paracetamol, amitriptyline and omeprazole normally.
I didn't take anything all day and to start with I felt great, didn't feel sluggish and lethargic at all and did a bit of hoovering etc.
By about 4pm I felt terrible and in a lot of pain, my legs in particular were very painful and achey. I couldn't even stand up to make the dinner! My hip and back were also painful. In the end I took my normal afternoon meds and my night time ones at the same time at about 7pm. (4 tramadol, 2 paracetamol, 2 naproxen, 2 amitriptyline) decided it would probably be ok as I hadn't taken anything all day.
Didn't sleep very well and DH had to help me get undressed as I couldn't move without it hurting sad

So I'm guessing the drugs do work...

Solo Tue 23-Jul-13 16:27:32

sad gallifrey

Matildathecat Tue 23-Jul-13 17:33:37

Gallifrey,

Your post leaves me really concerned...4 tramadol plus all the other meds is enough to cause you real harm. You should never double up your dose. Sorry to say you are better keeping your levels steady with your normal dose. If you feel like reducing the dose do it slowly, ie all normal but only one tramadol, then assess how you get on.

Sorry if I sound preachy but if I took all that I would actually be unconscious. And i take a LOT of drugs. Sounds like you have enough problems without a knackered liver. If you want to reduce slowly your pharmacist would be able to advise you.

Take care.

On a personal level I have a dilemma. I have been taking my dog to agility classes. The people there only know I have a 'bad back'. Now the dogs are getting better the whole thing is getting much more physical, essentially you run the course with your dog. Last week I tried to hobble along but spent all next day in bed. Today I did ask for help but really it's a physical hobby. I'd be sad to stop as we both enjoy it and I am meeting new people and giving my week a bit of structure. Do I speak up and ask for more help or accept I'm not up to it and find another hobby? (One that involves lying down!!) the group are nice but we don't know each other that well and everyone else has their own dog, of course.

Opinions please?

OddSockBox Tue 23-Jul-13 17:43:12

Gallifrey that sounds like a bad day sad I'm the same I want to get off the drugs but I'm holding off until I see the pain management nurse because it sounds like it's not as easy as just stopping them, and when I've tried stopping I've had a similar experience to you.

yegodsandlittlefishes Tue 23-Jul-13 19:59:28

Solo I answer to most things (Yeo sounds kind of Cornish, I like that!)

Gallifrey That sounds terribly frustrating. I used to live in an area where acupuncture was on NHS through referral at hospital. I doubt it is done like that here, might be worth putting out some feelers to see whether you can find out about NHS acupuncturists (information on them might be more readily available than for private practitioners) and whether you can book a private consultation.

Another option to consider is chiropractic treatment, but not knowing your history I've no idea if this is a helpful suggestion or not. I've found it very helpful for joint pain and back pain, but when in the amount of pain you describe, it was due to a trapped and bruised nerve. It was eventually helped by a combination of pilates exercises, physio and then chiro...simple really, I know!

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