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My health is getting me down. I should be able to cope with it better, but just can't.

(28 Posts)
saltire Mon 08-Sep-08 21:48:40

I have Fibromyalgia.
Up until recently it's only been the pain, I have what I term "backgorund pain" all the time, accompanied by flare ups, which can be all over my body or specific to one aprt.
The past couple of weeks I've had hellsih fatigue. This is a symptom of the Fibro, but not one which has affected me so badly before. I am falling alseep on the sofa, struggling to get out of bed - the last 2 weeks of the holidays it took me 30 mintues to get from bedroom into shower, I was actually sitting ont eh bottom of the bath whilst having a shower as I didn't have the energy to stand, it was such an effort to get moving.
I am back to work, and to be truthtful really struggling. I should go and see my GP, but he would sign me off, and I can't decide wether to go ahead with my CM registration, I've done it for 7 years, with Fibromyalgia and its never been an issue.
I was supposed to go to apin management group, but I couldn't get itme off work.
I feel as though the docotrs don't care, one of them actually told me to "get your mum to buy a house and move down from Scotland to look after you".
I jsut feel so low and fed up and the pain all the time is getting to me, it used to be that I would ahve long periods of respite from pain, but these are getting less frequent, I wake up (tired) and wonder what's going to be sore today.
I think I just need to get this writtne down, see if it will make me feel better, I've always coped with it before and never let it win, but now, well i could curl up in a corner and let it take over my life, that's how I feel

Twiglett Mon 08-Sep-08 21:51:48

I hear you Saltire, I am so sorry you are feeling like this and I think you are doing incredibly by just coping with this.

I have no advice I'm afraid as I don't really know aboug Fibromyalgia.. is this a condition that flares and retreats .. like an auto-immune condition?

saltire Mon 08-Sep-08 21:56:02

It can flare up and retreat, some people have it all the time. I've always considered myself lucky to have periods with few flare ups, especially when i read how some people suffer
it affects people in different ways.

Twiglett Mon 08-Sep-08 21:57:42

ahhh just like an auto-immune condition then?

Is there anything that can help take you out of flare? Any anecdotal treatments or scientific ones? For DH condition dietary changes can help some people including an apple fast (sounds odd I know)

Twiglett Mon 08-Sep-08 21:58:46

this is the Cayce apple fast .. I know it's helped many Ankylosing Spondilitis sufferers

KatyMac Mon 08-Sep-08 22:02:07

Saltire I am sorry you are feeling so bad

I am in an attack atm (CFS/ME) & I know the pain you are talking about. I can also understand your title totally. (& the dr's [anngry])

I am pulling in my diet and only eating safe foods - I am considering other controls to minimise my symptoms

Would it be better to C/M as you don't have to leave the house at x time every day or would the physicality of the job defeat you

saltire Mon 08-Sep-08 22:03:10

Its similar to ME and LOupus, similar symptoms. I ahve stopped taking artificial sweetenrs, as I read that this can trigger flare ups (not made much difference though) I shall read the thing about the apples later.
Ankylosing Spondilitis can be a symptom of Fibro - its made up of lots of different symptoms, none of which seem to ahve a trigger or specific pattern

Twiglett Mon 08-Sep-08 22:04:34

yeah sorry .. I get a 'fixit mentality' sometimes ... and sometimes people just wanna go 'arrrghhh' instead

BecauseImWorthIt Mon 08-Sep-08 22:05:27

I read a very interesting article recently about pain, and how men and women experience pain differently. Apparently women experience pain both physically and emotionally, whereas men feel it just physically. Therefore standard pain killers like paracetamol and ibuprofen are less effective with women.

The two illnesses that they talked about were fibromyalgia and IBS, which apparently women suffer from more than men - and they have had great results prescribing anti-depressants alongside the painkillers. The anti depressants deal with the part of the brain that feels the emotional aspect of the pain.

(Hope I've got the general gist of that right).

saltire Mon 08-Sep-08 22:05:33

Katy - that's one of the resons I think I managed to childmind before, If I was having a bad day we would sit on the floor and do stories, or at the table and pain and playdough. if I go to the GP though and say how crap I'm feeling and how sore and fed up I am, he'll put it in my medical report for OFSTED

BecauseImWorthIt Mon 08-Sep-08 22:07:13

Apologies if you know this already.

KatyMac Mon 08-Sep-08 22:09:17

Chocolate & paracetamol - so we get an emotional boost

When you get the health form out the way then go to GP - what is holding it all up it seems weeks/months ago that you started it all

saltire Mon 08-Sep-08 22:09:39

BIWI - I take a low dose of ADs at night, alongside my painkillers - which I have to buy at Boots, because the idiot doctor at pain clinic told my GP my pain was caused by migraineshmm which were cause d by codeine, so he stopped prescribing them. I take Syndol at night, which greeny suggested to me. I don't get migraines all teh time, which I would do surely if it was that causing the pain,
I take 20mg of Amitryptiline at night, I'm thinking of increasing it becasue I feel down, but not sure if this is a good idea, I'm groggy and tired enoguh without them adding to it.

Twig - thanks though for reaidng the OP,a nd answering, is AS what your DH ahs, if oyu don't mind me asking?

KatyMac Mon 08-Sep-08 22:14:09

That is an idea I could go back on the St John's wort - it normally helps

I find my brain goes funny when I am like this & I can't make decisions or chose things or change things

It is frustrating

Twiglett Mon 08-Sep-08 22:16:11

AS and PsA (Psoriatic arthritis)

noddyholder Mon 08-Sep-08 22:19:23

where do you live saltire?

hotcrossbunny Mon 08-Sep-08 22:23:13

Oh Saltiresad I do know exactly how you're feeling.

I was diagnosed with ME 16 years ago and have times when I can cope with normal life. I tend to get to about 75% of 'well' IYKWIM, but then a relapse happens and life just seems incredibly tough. I remember when dd was about 12 months, lying on her bedroom floor as she played around me, as I just physically couldn't get up off the floor. It's so hard to try to keep going when you feel dreadful, and when you don't have any support network, it's nearly impossible.

Recently though, they've discovered I have damage to my inner ear, and that may give a reason for most, if not all, of my symptoms. The reason I've waffled on all of that is that my GP's weren't in the least bit interested in me. I'm sure they thought it was all psychological, and it wasn't until I'd read something on the net and asked a locum to refer me for tests, that they have discovered something physically wrong.

So, no answers I'm afraid, but don't let the drs fob you off. Although fighting for care is nearly as exhausting as being ill... Do you have any support groups near you? They may be able to give you an idea how to approach your gp, with regard to your work. I was a teacher and was eventually made redundant. I've not gone back to it, as I can never guarantee how I will be feeling on a certain day. I've considered CMing too...

Let us know how you are doing. I didn't mean to turn this into being about me, you just struck such a chord. Interesting what BIWI said about pain. I think we probably do experience pain differently, and being in pain is completely exhausting.

Shoshe Mon 08-Sep-08 22:31:34

Oh saltire this exactly how I was at the beginning of the year, it went on for four months, I was so exhausted, and my sleep was awful, my problem was not going to sleep but staying asleep.

Please go back to your Dr.

I have a slow release pain killer called Etodolac, my Dr changed me taking it from the morning to the evening, so that it released more over night, ( it was 'running out' about 3 in the morning, taking it in the morning, waking me)

In the end tho it was having time off at Easter and just sleeping when ever I fell asleep, that helped.

Tittybangbang Mon 08-Sep-08 22:36:00

So sorry Saltire that you've been feeling so bad.

One of my clients has this condition and has been in a wheelchair for years. She had a little boy last year and I know she's really struggled to cope. She has a very black sense of humour - I think that's how she copes. Everyone who knows her is amazed at how much she laughs, but I know she is very low a lot of the time.

It's a shame you don't have more coherent care from the HP's who are supposed to help you.

Hope you feel a bit better soon.

KatyMac Tue 09-Sep-08 07:23:09

How are you today?

Miaou Tue 09-Sep-08 07:38:04

Saltire sad - do you think (in fact I am sure you have said this before) that your current job is exacerbating your symptoms? Are you in a position to give up work for a month or two to let your body recover before you begin childminding, might that help?

You could continue with the registration process for now and just hold off on taking children in if things don't improve (she says)

So sorry things are so bad though sad

saltire Tue 09-Sep-08 08:33:27

Thanks for the replies, iw ent to bed after my last post.
Shoshe - I am thinking of trying to get a different kind of pain killer, soemthing stronger than what I am currently buying over the counter.

I have no back up support here. The other week , which luckily Dh had the day off, I had to get him to cut my food up for me, and help me dress. Some days I can't even step out of the bath.It was better when my mum was just 3 hours down the road, she often came up if I was having a flare-up, if DH was away. I've not got that now, just have to get on with it

Miaou - I think work is exacerbaitng the sympotoms a bit - I have to be on ym feet a lot more and do get quite stressed there which can cause headaches, which, if I ahve a flare up as well, almost finish me off.
I don't know if I can afford to pack it in though just now, I still need to find £95 for a Drs form for OFSTED!
I ahd some unpaid leave voer the holidays, but got no rest with 2 Dses and a puppy, although I did often go and lie on top of the bed whilst the Dses were downstairs (they are 10 and 8 so no one panic) but of course they were in and out the bedroom constantly asking for things
If we go away somewhere, I have to factor in that the next day I might be really sore if we walk, or that I might wake up on the day we are going out and be in pain, but still have to struggle on because I don't want the DSes to miss out. I always said I would never give in to this, but now I feel like I ahve no choice.

noddyholder Tue 09-Sep-08 08:36:18

Saltire you may be taking too amny different pain killers.Syndol can make muscular pain worse if you use them a lot.Have you considered alternatives like reiki massage or swimming.The anti histamine in syndol which temporarily relaxes the muscles can make you feel down aswell

BecauseImWorthIt Tue 09-Sep-08 09:34:57

Syndol will also make you feel sleepy, which won't help you.

I think you really have to go back to your GP and get some proper pain relief prescribed for you.

KerryMum Tue 09-Sep-08 09:37:26

Message withdrawn at poster's request.

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