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Original poster

Spooning into summer - life with chronic pain & fatigue.

999 replies

Grockle · 14/07/2013 07:58

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/

OP posts:
TheAccidentalExhibitionist · 03/10/2013 20:25

Thanks building for your kind words.

foxy6 · 03/10/2013 21:25

accidental have some (((hugs ))) and i hope things get better for you.

i'm after some advice as i'm not sure what to do about work. i have been off sick now for 5 weeks after a bit of a relapse, the last time i was off was for two months in February and March. i'm supposed to have a meeting about my sickness and i'm not sure what to expect there but the problem i have at the mo is that i think i'm ready to go back but i know i will be off again soon. i'm due a gallstone op and had the pre op assessment on Monday. i don't have a date but can only assume it won't be too far away so will be off sick again for that. the specialist i saw last Wednesday suggested a change of medication so i have an appointment with the GP a week Tuesday about changing meds and i worried about the effect that would have on me and then needing to take more time off. all of that would mean 4 episodes of sick which wouldn't be good i've been told one long sick is in essence better than two short as were only allowed three sicknesses in a year regardless of how long they are. before this i would only take one day off at a time. so do i go back with the possibility of being off again two more times in the near distant future or just extend this sick leave for a few more weeks?

BeyondTheLimitsOfAcceptability · 03/10/2013 22:46

Accidental Flowers
How long will it be before you see the specialists?

magso · 03/10/2013 23:12

Foxy do you have an occupational health person who could help you?

Accidental thinking of you and hope that you get seen and get some answered and treatment to start feeling better very fast.

TheAccidentalExhibitionist · 04/10/2013 06:48

I have an appointment with the neurologist on the 14th of October and the GP is trying to fast track me to see a medicine interne (rare and complex disease specialist) but when I spoke to her yesterday she hasn't been able to get through to them.
I'm waiting for some antibody results back from Paris. They'll take a week.
Medicine in France is quick but disjointed and patchy.
I'm deteriorating so fast I wonder if waiting that long will be too difficult. It may be that I have to present myself to A&E. I guess I can only take it day by day and try not to feel too overwhelmed with it all.

Original poster
Grockle · 04/10/2013 14:12

Accidental, that does sound worrying. I am glad you have some good referrals, and urgent ones too. I'm sorry you are deteriroating so quickly. How are your family coping?

Foxy, do you have occupational health? Mine have been really good - I am employed by the local council.

OP posts:
buildingmycorestrength · 04/10/2013 21:00

LP went okay today, just recovering now. Hope others are not too low on spoons just now.

Accidental, don't hesitate about A&E. If you are feeling like your body is reaching an emergency state, that is what they are there for.

foxy6 · 04/10/2013 21:16

we do have occupational health but I haven't seen anyone from them do you think I should before returning back to work to see what they say

Original poster
Grockle · 04/10/2013 22:12

Glad LP was ok building.

Foxy, I'm surprised you've not been referred to occ health already. It would probably be a good idea to talk to them.

OP posts:
Kormachameleon · 04/10/2013 22:25

This reply has been deleted

Message withdrawn at poster's request.

magso · 04/10/2013 22:35

Foxy, yes I think contacting occupational health may help. OH are there to help protect health and have a lot of clout. I do not know if you should see them before returning to work or not. Could you phone?

Building was thinking of you today. Do you have to wait along time for the results?

Accidental, I agree go to a&e if you feel yourself getting worse. I don't know how it works in France, but in uk it's faster to get tests ( and therefore faster to get treatment) done in hospital than waiting for outpatient appointments. Hope that today has been a better day also.

My fitness assessment was really only showing me around and how to use the machines. ( phew) There are 2 machines that could be used almost recumberant and very gently, so might be useful. I signed up to membership because it was about the same cost as one Pilates class a week( council gym). I thought it would help me keep going as I hate wasting money! I felt a bit out of place as I didn'tt know the language the instructor was using, - which just shows how kong i have been unwell and unable to exercise but looks like you can just do what you want at your own pace. I am hoping to build up strength and flexibility as this is supposed to help. Pilates is cheaper than going to the chiropractor!

magso · 04/10/2013 22:38

Kormachameleon, sorry cross posted. What happened? Are you still in hospital, or back home now? Sounds very scary.( hug)

Kormachameleon · 04/10/2013 22:45

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Grockle · 04/10/2013 23:05

Korma Sad Thinking of you.

Magso, the gym sounds good. Mine was a waste of time.

OP posts:
Matildathecat · 05/10/2013 12:55

Magso, does the gym do introduction courses for Pilates and the gym. My Pilates classes insist on it as it is so important to understand the basics and do it correctly. In a big class the instructor can't really give enough attention to beginners. Ditto using the gym, the staff are there to help and ime are pleased to be asked.

Hope you get a lovely steam and jacuzzi at the end.

magso · 05/10/2013 19:50

Matilda I did a one to one intro at a specialist pilates studio, which was very valuable to work out how to do most of the basics. It was too expensive to continue. The group classes are very big and you are right the instructor hasn't a hope of watching everyone- and frankly I see beginers struggling. At first I hid near the back, but now I try to get close to the instructor so I can watch and get it right! I only got the basic membership, but there is a spa should I feel rich enough! I woke up with very stiff shoulders and neck today - not sure why as I only used a couple of machines in order to work out how to use them.
Korma I hope your breathing is getting better. As a fellow somewhat brittle asthmatic you have my sympathy.
I have been reading up on low cortisol/ adrenal function. Gosh its trendy at the moment!! Very Woo. However it does make some sense, so I will read up diligently.

Sandthefloor · 05/10/2013 22:58

Ok, taking the plunge! I've lurked on this thread for a long time as I have felt unwell for 18 months with a "hit a wall" kind of tiredness and terrible joint and muscle pain. Had a private vit D test that showed low levels of vit D. Have been taking high dose supplements since then. Little support from GP, told to come back in 6 months for retesting, suggested that it could be something like fibromyalgia.

magso · 06/10/2013 17:45

Welcome Sandthefloor, although sorry you are suffering. Do you think the vit D has helped reduce your symptoms at all? Sadly many GPs do seem at a bit of a loss unless a test points in a particular direction. We could do with a resident expert amongst us!
I bought a painmaster micro current patch yesterday as my neck and shoulders were very sore and stiff, but I have no idea if it is helping. It is not irritating like a TENs patch, and certainly had not helped in day 1. Today I am not so sore so something is helping - but it might be the way it would have developed anyway. Anyone else used one? Couldn't find much on the internet either way.
Hope everyone has managed to enjoy the last of the sunshine.

Sandthefloor · 06/10/2013 21:45

Thanks magso. Think I felt a bit better during the summer as I went on holiday and enjoyed some proper sunshine, but I feel I'm slipping back the way now. My GP just told me to take some over the counter tablets and didn't specify at what dose so I have been self medicating really. I started off taking a high dose and then cut back a bit as I didn't want to overdose. I've increased it again last week as I felt my symptoms getting worse. Really need to go and get levels checked but hate going to doctors as I always feel like they think I'm making it up.

Original poster
Grockle · 07/10/2013 01:03

welcome, Sand. Magso, the patch sounds interesting.

OP posts:
BeyondTheLimitsOfAcceptability · 07/10/2013 10:29

It is arthritis awareness week this week
i've started a thread in chat... :)

OhYouBadBadKitten · 07/10/2013 15:35

I hadnt realised arthritisy people were on this thread too. I might come and gate crash if I may.

Kormachameleon · 07/10/2013 17:30

This reply has been deleted

Message withdrawn at poster's request.

SconeInSixtySeconds · 07/10/2013 20:57

You are all really knowledgeable, can I pick your brains please?

My back went the week before the summer holidays. The doctor gave me naproxen, cocodamol (15/500) and diazepam. About a week later I started going to an osteopath.

It took about three weeks for me to able to drive again.

I had another major spasm in early August, tramadol this time, and a week ago it went spectacularly again. I don't like the tramadol, it spaces me out so a telephone conversation with a dr resulted in a stronger cocodamol (30/500 this time). It hasn't helped.

I haven't been able to drive for a week. I live in the middle of the countryside, two buses a day etc. DH is working away in oz, my parents live 2 hours drive away. Luckily the dc get a bus to school (thank god). I can't get to the osteopath (9 miles away).

For the last two days it has moved from my back into sciatica I think - massive shooting pains from the centre of my bum into my hips and straight down the sides of my legs into my calves and feet. It bloody hurts. Take your breath away pain. The cocodamol hasn't touched it. I have tried the tramadol and zippedee doo dah. Zilch.

The next appt I can get is on Saturday am for the doctors. I am planning to ask for a referral for an MRI but what else can I ask for/expect help with/get for the pain?

Sorry for the essay. If it were just me I would probably just get on with it, but seeing me in so much pain is really upsetting the dc, esp my ds(8), so any advice would be terrific.

magso · 07/10/2013 21:46

Could you telephone the osteopath who has been treating you, and ask their advice. Could they come out to you?
Could the gp refer you urgently for physio? Although I have a bad back myself I have rarely seen my gp for the back problem, (fortunately an osteopath or chiropractor has been able to reduce my symptoms whenever i have got sciatica and knumbness in my legs and feet) so can't really advise. Others will be along soon.