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/

If anyone with ME/CFS has some good Christmassy photos, they are needed for fundraising Xmas cards - link

oh i got a lovely photo of my kitten hiding in the christmas tree last year i might enter that

foxy I don't get bad dreams with amitriptyline (then again I only have 5mg as I can't cope with more) but tramadol caused very vivid dreams for me!

Now the kids are back to school and seemingly in routine.. my fibro has gone from a nagging ache and exhaustion to full-blown flare-up (& that's with trying to do things with the kids over the summer but getting adequate rest periods). I'm not really succeeding with any meds and wonder if any other Fibro sufferers had any thoughts?

I take co-codomol 30mg/500mg x2 4x daily plus 5mg amitriptyline - these are my regular medicines

I have ibrufen 800mg x2 which I can take once a day if needed but tbh, don't find it much help.

I've tried tramadol - helped with all but the worst pain but caused nausea, retching, general urgh-ness, itching, vivid dreams/stopped me sleeping so have come off.

I've also tried Dihydrocodeine 30mg and then 40mg 3x daily with no noticeable effects. I've just tried Fluoxetine 20mg 1x day - no noticeable effect pain wise but nausea, stomach ache and diahorrea so have stopped those.

I also take cod liver oil with added vits & minerals plus an extra Vit d supplement.

I have an appt next week to see my GP again, she implied at the last appt that there isn't really much else I can try. I'm just wondering how others have got on with meds and if there is anything else I can suggest trying?

i just take the amitriptlin once a day and then paracetamol/ co-codamol and ibuprofen when needed. on bad days that 4 times a day on good days maybe only once.i have also started taking multi vitamins with iron and vitamin c plus zinc and cod liver oil although i honestly don't know if they help or not.

Hey everyone, hope you are all doing ok as can be.

I've had to stop all my painkillers thanks to being pregnant, so struggling a bit. Especially as I've got hyperemesis on top, gutted that the hyperemesis has now stopped me in a way that even chronic pain couldn't.

Have also had to admit that I cannot cope in a top floor flat anymore, so my doctor is going to help by providing evidence for me to be rehoused.

So hard to admit that I need more help :(

always do check your local hospital for CFS services. Our pain clinic deals withCFS and do management courses which include CBT etc.

Like living with chronic pain they help you find ways of coping.

Daisy, wow that's a lot of codeine, would make me really sleepy! I have chronic pain from a spinal injury and take gabapentin which I find very helpful. You have to start very slowly and build up as it causes dizziness, sleepiness to begin with. As you get used to it you increase the dose. I take 600mgs x3 daily. Also naproxen x2, cocodamol as and when but at least 3 x 30 mgs daily and amytriptiline 20 mgs at night. If I get activity levels right this lot helps.

Yesterday I had tramadol at 4pm and boy it disturbs my sleep! Also sort of psychedelic visions when closed my eyes to sleep around 11pm. It's a shame as it works as an analgesic.

I now compare my pain to living with an angry lion. I tiptoe around whilst he growls. Very occasionally he sleeps. Sometimes he bites me with no provocation at all....

Anyway, if your GP is out of ideas gabapentin is a possible option.

Can't really help with painkillers, I only take amitryptiline (40mg) and try to avoid everything else as much as possible due to worries about effects on my stomach etc.

I am taking lots of vitamins though and I think they may be helping a little, at least in the sense that I haven't had any colds since I started a few months ago - obviously that could just be coincidence though! I am also hoping that I find winter a little easier (not dxd with SAD, but depression is always worse for me in the darker months). I take:
Magnesium with calcium
Multivitamin with iron
Vitamin D
Vitamin C with zinc
Vitamin B complex
I get them all from Boots on 3 for 2 - expensive at the time but then most of them come in 6 months' worth so it ends up pretty reasonable.

One other thing I'm doing is trying to remember to gargle with a proper antibacterial mouthwash (Corsodyl) as I am very prone to sore throats, tonsillitis etc.

Generally I find looking after myself so so hard, I always have (low self esteem, no modelling of self care from parents etc) so it is a real battle to try and do these things but hopefully it will pay off if I don't get all the little illnesses (which don't end up so little, when you have problems like CFS!) so much.

I like your lion analogy matilda!

MOG, I hope you can get rehoused soon to a more appropriate home. Are you already in a council place or are you on the register? We applied about a year ago (currently private rent), we are on Band B so hopefully it'll happen in the next year or so. I've been told if my DLA comes through (still waiting...) it might be worth asking for rebanding based on health needs, but I'm not holding out much hope for it TBH.

Hullo all - just to introduce myself, I've been ill since Feb 2012 (so not long comparatively although it feels like long enough, thank you!). Kids are 8 and 6. Husband very helpful but demanding job. No family nearby.

Classic case of virus that I couldn't seem to quite recover from, main symptom fatigue but also some numbness and tingling down one side, and previous history of back problems.

I've been very lucky because my doctors have a research project which I am part of. Doctors did a scan and found that I have a narrow vein in my neck, which they think might be causing the blood to get 'stuck' in my head, which then causes a build-up of spinal fluid. Intracranial hypertension and excess fluid in my spine.

So I am having treatment for that. I have a lumbar puncture scheduled to remove some fluid and see if I feel better (the last one worked well) and then they might balloon the vein to open it up.

I've also had CBT to help me cope and it has been great. But then I bloody love therapy.

On a similar decluttering mission to fuzzpig [waves] as the mess is just awful. Have cut out grains and feel much better for it and have stopped gaining weight. Work freelance and major project has come to an end so am having a few months off. Having acupuncture at the moment and I'm sure it is helping a bit.

So, in all, not going through a bad patch just now and when I look back it feels like a bad dream. Sympathy to all of you struggling at the moment.

Hi, I was hoping to join in for some support.

I am really struggling at the moment. I have fibromyalgia and CFS. I was diagnosed with pneumonia about a month ago and then 2 days ago I picked up my 17 month old and got a shooting pain across my back and down my legs and then just agony. I have a bulging disc which has slipped onto my sciatic nerve. In not allowed to lift my toddler for a week but dh has had to work and my dad has been helping but he has a complex about us thinking he's taking over (even though we try and tell him we know he absolutely isn't) and he keeps bringing ds2 for cuddles with me!

I just feel like a rubbish mum full stop at the moment. Not helped by one of my 'friends' saying that my boys and I always seem poorly and I really need to adjust my attitude.

My ds1 (jut turned 6yrs old) has been investigated for cancer at Yorkhill for the last year. They have thankfully ruled that out as although his bloods and scans are showing lymphadenopathy and his bloods were indicating lymphoma, his blood work hasn't progressed into higher numbers, so they think that he is just in chronic pain and are now deciding if he has CFS too

My ds2 was born with CMP allergy and reflux and has screamed in pain for a year. He had meningitis and scepticaemia at 4 months old and we thought we may lose him!

I know to friends it may seem like there is always something but for my dh and I it's been living hell. Dh's work has gotten so busy and he's not home now until 8pm, by which time I'm past the point of collapse.

I take tramadol as a when needed, usually 200mg a day spread out and I have dihydrocodeine if I need extra pain relief. I take thyroxine and amitriptyline as well. I have been on tramadol for 12 years and through both pregnancies (on consultants advice) and it gives me some quality of life as it makes some of the pain bearable.

I try to smile every day even when I am in so much pain that I'm not sure I can take it any more. The tiredness is as I'm sure all of you know, bone crushing!

I'm thinking of putting my 17 month old into nursery part time and I feel so so so guilty. I never needed to with ds1 but my health has gotten worse this last year, probably because I was using all my spoons up on my boys. Does that make me a bad mum? I'm in tears writing this, I want to be a normal mum

Sorry it's so long, just needed to get it off my chest.

You're not being a bad mum at all! You are making a really sensible decision, which will allow you to recover a bit, and be able to enjoy the time you spend with your kids more!

It does sound like you have had an awful time of it, don't be so harsh on yourself.

Oh, helibee that is so horrible for you. It is all so much. Forget about your stupid FW of a 'friend' who obviously does not understand living with chronic conditions.

Having children with potentially serious health issues as well is truly awful, I really feel for you.

If the idea of nursery is daunting and seems like too much for you right now, maybe consider getting a 'mother's help' type person to come in? I think your wee one would be alright in nursery part-time, of course, but you might not want to give yourself extra anxiety on top of everything else. It is important to make a decision that feels right, even if not ideal.

One thing you could do is something my husband suggested which has helped me lots when I have a hard decision to make. Decide on something but sleep on it. In the morning you will know if it is the right decision.

hi helibee
you sound like a good mum who is trying her best in difficult circumstances and your friend doesn't sound much of a friend.
maybe it wouldn't hurt for your youngest to go to nursey to give you a little break. it wouldn't mean letting him down but think of it as giving him more as with the little rest you will have will help you feel better when he is there to be looked after, if you get what i mean.
i'm just glad all mine are older now my youngest is 6, i cant imagine how hard it must bee looking after little ones with this.
don't be so hard on yourself.xx

Thank you I will sleep on it and see how I fee about it tomorrow. He is going in next week as I have no-one here then and the dr was quite insistent that I would make my recovery worse if I over did it. Hopefully I'll see that he loves it and doing a few part time hours will help. It helps speaking to people who understand. My husband is great and he is supportive but I know it takes a huge toll on him too!

MOG I had hyperemesis in both pregnancies but was hospitalised 5 times in my last pregnancy. How many weeks are you? My consultant said that stopping the medicine would have been worse as it was the only thing keeping my body functioning. If you are near Glasgow then I can highly recommend him I was on a 5 Litre a day drip and still had 4+ ketones in my urine. The only thing that helped was IV ondansetron and then once my body could tolerate some food and drink on that, they gave me the ondansetron tablets. It was a Godsend

{{another unmumsnetty hug}} Helibee - you are not a bad mum, you are trying to do the best with the horrible hand you've been given. Try and see nursery as another way for your ds to socialise and do fun stuff but if you really don't like it then maybe a mothers help as building suggested might be a thought?

Thanks for med suggestions - I'll ask about gabapentin, there's also a Fibro clinic in Bath that I've wondered if it was worth a referral too...

I had hyperemisis too, I wonder if there is a link?

Feeling a bit better today. Yesterday was awful.

Had a look at magnesium supplements, but they were a tenner, so can't afford yet. Will speak to the gp about it.

I've just started taking magnesium 300mg supplements with B complex vitamins. I also take
. L theanine
. L arginine
. Alpha lipoic acid & acaetyl l cartinine
. Vit D

My blood pressure has been high since getting hypertension in my last pregnancy. I'm not wanting to take more medicines so I'm hoping that losing weight and following dr Sarah brewers advice in her book will help.

Has anyone else tried the clean eating, i.e. cutting out sugar, processed foods etc? Did it help? We already eat mostly gluten and dairy free as ds1 is coeliac and both the boys are allergic to dairy. I am finding it hard not to sneak in a cheeky kit kat though!

Also ds2 had an hr session at the nursery today as they are doing emergency care for him next week and he loved it. I do feel a wee bit better about it but still hard to shake the guilt of being a SAHM who needs her child to go nursery. However my wonderful dh did point out that I was already unable to work before I had the children and I was on incapacity benefit so I shouldn't think of myself as a SAHM. I love him

Hiya helibee I think it's great you are using nursery and that's great that he enjoyed it. My occupational therapist would be very welcoming of this (my youngest just started school, but I would certainly use daycare if he was younger!) - our sessions have all been about finding ways around difficulties, using short cuts and crucially NOT FEELING GUILTY ABOUT THEM

Instead of feeling guilty you should congratulate yourself on taking a positive step towards better balance in your life.

And consider ditching that so called friend. I'm gobsmacked at that attitude, any idiot can see what a horrible time all these events have created for you :(

Anyone use Jacuzzi type things? OT suggested it for pain relief... not sure I even know where my swimming cossie is though...

Fuzzpig we had access to a little warm bubbly spa bath on holiday, so I used it every day and I think it helped a little. Am back to stiff and achy now.

God, jacuzzis! Just the thought of trying to sort out my leg hair so that I could expose flesh in public is exhausting! Would use up all my spare spoons!

We have a hot tub at home. TBH I've avoided it with my chronic fatigue as it makes people feel very tired. It's deeply relaxing but very tiring.

I suppose it's helped a bit with my chronic pain.

The one I used was only a little warm 30c, so you felt tingly on getting out.

LOL Altogether hadn't considered that!

Good point about heat too - I do like baths but they can make me very dizzy if they are too hot, which is a shame as they do give pain relief!