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Spoonies thread anyone?

(37 Posts)
kinkyfuckery Wed 17-Jun-15 18:21:52

There was one on Parents With Disabilities but it hasn't been used in a few months. Any interest?

daisychicken Wed 17-Jun-15 18:27:19

I'm interested! ��

Gnome7000 Wed 17-Jun-15 20:30:55

Me too!

kinkyfuckery Wed 17-Jun-15 20:44:05

Let this be it then :D

I got a diagnosis of Fibromyalgia about 3 years ago. I also have chronic fatigue and IBS. Pain is up and down most days but I'm really struggling with the fatigue just now. My inflammation levels are slightly elevated and iron levels are borderline so back in a few weeks for repeat blood tests.

How is everyone else doing?

TaintedAngel Wed 17-Jun-15 20:56:53

I like this idea.
kinky I have been diagnosed with Fibro a few years ago too. Pain isn't so much of an issue for me ATM but the fatigue I get is horrendous. Though I think I have ME but they just havent given that as a formal diagnosis. It's a shit condition!

daisychicken Thu 18-Jun-15 13:27:37

Another one with Fibro! I've actually had fibro since my late teens following a bout of Glandular Fever and had a remission period lasting roughly 6 years. Everything then started to gradually get worse and worse and then flared up into a full fibro flare. That was about 4 years ago. I'm now very up and down - not so bad days and bad days but it's constant. I have a mix of pain, exhaustion and a mix of the two. At the moment I'm very achy, not painful as such but overwhelmingly uncomfortably achy and I'm so tired, falling asleep all the time. My Vit D levels were very low but within normal range. I've taken supplements to get the levels up. Otherwise all my blood test results are "normal" - makes me feel very much like I'm always complaining but nothing is wrong when actually, I'm so unlike the person I am without the pain and fatigue.

I'm a SAHM but my DC are both school age - there is no way I could work as I'd be off ill all the time. The looks I get and even the odd comment when folk realise I don't have very young children is horrible. Do any of you work or are you at home? How do you describe "what you are" if you don't work?

Gnome7000 Thu 18-Jun-15 20:04:43

Been diagnosed with fibro for 10 years, but also have hypermobility syndrome and a few other things (I seem to get diagnosed with something or other every time I go to medical appointments confused )

I work, but there are times when it is so hard to keep going in! I don't take time off sick (partly because I'm not convinced I'd ever go back) but at the same time sometimes I'm sitting at my desk in what feels like a light coma. Or worse, tearful. I have a really unsupportive manager at the moment which I'm finding really stressful, and I've been laughed at a lot for brain fog issues which can be quite upsetting to be honest. I'm too tired after work to do much, which people seem to take a bit too personally sometimes, but I can't afford not to work. I'm trying to make an effort to explain to people why I can't do something so they don't just think I'm not interested, but it's not going too well. Think that's just the curse of invisible disabilities.

I'm always trying to find supplements which might help so if anyone has any recommendations I'd be greatful!

kinkyfuckery Thu 18-Jun-15 21:46:57

I don't work. I also have school aged children but I am 'lucky' that they both have SEN so I am registered as a carer and not under pressure to work. My GP has told me recently she certainly doesn't think I'd be able to work anyway - which on the one hand is a bit of a relief (knowing I'd have her support) but on the other is extremely depressing.

Gnome Holland and Barrett recommended me a supplement called 5-HTP which is often used in patients with fibro. I've only been taking them a month or two so still early days to know the effect. I also take magnesium phosphate for restless leg symptoms (alongside medication for it) and Valerian to help with sleep. Again its fairly early days of only a couple of months, but i figured I'm willing to try anything. I can point you in the direction of a homeopath that can do Skype consultations and prescribe if you would be interexted.

Has anyone tried alternative therapies? I've had one half hour session of Reiki a few months back which left me with low pain levels for a few hours which was lovely! I tried something called magnetic therapy at a Carers conference day a couple of weeks ago, which I'm still working on seeing results with. I also had reflexology which was incredibly relaxing and she easily identified sciatic pain which she told me to be careful with.
I also have a TENS machine I bought after a trial with our Pain Clinic team, which I use on my knees when I know I am going to be walking a lot.

Does anyone do regular exercise? I have a monthly gym membership but have been really struggling to use it the past few months

Gnome7000 Fri 19-Jun-15 10:36:57

Thanks kinky. I also take magnesium and valerian. Might try the 5-HTP, but the interactions look a little scary as I take a fairly high dose of amitriptyline!

The pain clinic have given me acupuncture before, and tried Botox on particularly bad facial muscles (which was great). I've had physio a few times and can release tense muscles myself now. I've got a TENS machine too, which can help.

kinkyfuckery Fri 19-Jun-15 13:04:09

Oh, I also take this www.vitabiotics.com/feroglobin/capsules/

Which has iron in it, so even more worrying that my iron levels are borderline.

kinkyfuckery Fri 19-Jun-15 13:06:58

The interactions for the 5-HTP can look scary, so I would always advise getting medical advice before taking any supplement. My GP said they would all be fine for me, despite the increased risk of serotonin syndrome. I take Tramadol, Duloxetine, Lyrica and Pramipexole.

daisychicken Fri 19-Jun-15 17:34:19

It is depressing not being able to work. I've tried this year to do a bit more with my interests outside the home, the idea being if I could manage with doing a bit more and try and increase it, then perhaps I could look at part-time work. But I've really struggled and am going backwards in managing my pain/fatigue and what I can do.

I've taken magnesium alongside vitamin D, multivitamins and minerals and something else.. can't remember what but didn't find it helpful. I have heard about 5-HTP, is it worth trying Kinky? I take co-codomol, gabapentin, tramadol and amitriptyline (only a small dose as it zombifies me). Also, you mention usin the tens on your knees - can I ask how you position the pads? Physio recommended I try one and it does help a little on my back but I can't figure out where to put the pads for joints!

Gnome I have hypermobile joints which the physio diagnosed after suffering with severe PGP/SPD in my pregnancies and onwards. I have been told it can make fibro worse but I don't know how true that it.

Exercise - my GP suggested yoga or Pilates. I've been hunting round for someone who teaches one of those and has experience of fibro or similar conditions and have recently just found someone. I'm trying to psyche myself but to give it a go - I want to try but nervous of the post-exercise pain and fatigue let alone struggling in the class.

The invisible-ness of fibro is hard I find. My parents and dh are supportive as are my close penfriends. But close local friends are unaware of how bad it is and never ask how I am - on the surface I look fine. I've just obtained a mobility scooter for days out as a family but I feel really reluctant to use it, especially if local friends see - I'm kind of nervous of their response - why I don't know!

Gnome7000 Fri 19-Jun-15 20:02:46

daisy I've been looking at mobility scooter! The same thing is putting me off too, but at the same time I'd be able to do loads more. I've heard the same thing about hypermobility and fibro... How did they put it.. Something like "fibromyalgia is a hypermobile body's cry for help" which I think could be accurate. It's very hard to balance the two conditions, eg TENS machine for knee muscles is great, but then the muscle pain was masking the joint pain. I tended to use TENS on the muscles above the knees, but I've stopped because of that. I'm in exactly the same place exercise wise. I've got a delicate balance going and I'm terrified of making it worse I think! Rheumatologist suggested tai chi as well as yoga and Pilates so I was considering that, but at home with a DVD so I can go at my own pace a bit.

I've developed a different condition in my feet that's set me back a bit as it's even more uncomfortable to walk, but should be getting some help with that soon hopefully.

kinky I try and avoid medical appointments (bad experience several years ago and now I get quite anxious) so I'll ask but it might not be until my next review blush. I'm already taking a good multivitamin, extra vit B, D and E, flaxseed oil, magnesium, zinc, collagen (in vain hope it might help my joints), starflower oil.. and some others. In my defence, my diet is restricted. My GP said my levels were fine when she tested last year.

daisychicken Sat 20-Jun-15 17:08:06

Gnome did you find a DVD that was suitable for fibro or similar conditions? I did buy one but tbh am terrified of making everything worse. Hence why I've spent a few months hunting for someone who could do yoga or Pilates and had some experience of similar conditions. I've signed up for a class on Wednesday eek! Knowing me, I will manage the class fine but feel the effects, the flare afterwards so I will see how I go. What is the condition in your feet if you don't mind my asking? I've been having problems but I'm leaning towards thinking its fibro atm rather tha anything else.

kinkyfuckery Sat 20-Jun-15 17:37:01

I'm like that daisy - feel fine during an activity most of the time, just suffer for it afterwards! I am still struggling with learning to pace my activities.

I did my Aqua Zumba class this morning (well, 45 minutes of it before my DD1 bumped her head in the pool and wanted me and I had to stop - she's fine by the way, just swam into the wall the dizzy mare LOL), and then have done a bit of gardening with DD2 this afternoon. I am dying now, so a quick pizza dinner is in the oven - Thank you Tesco! - and a quiet evening on the sofa with blankets and movies for us. We have a day shopping tomorrow for our holiday in two weeks which is going to involve LOADS of walking and standing around and is going to absolutely kill me!! I'll def. be taking my walking stick [old lady]

kinkyfuckery Sat 20-Jun-15 17:39:16

Oh when I use my TENS, I tend to use the pads either top and bottom of my knee cap, or one on each side. I have a double TENS so do both knees at the same time (or a knee and an ankle, or whatever is needed at the time - do they do TENS machines with a dozen sets of cables, or is that just the electric chair? wink ) No idea if it's the right way to do it, but it at least distracts me from the pain.

Gnome7000 Sat 20-Jun-15 22:00:42

Daisy the neurologist thinks it's dystonia but from what she's said it's not presenting in a typical way (it's both feet and should only be one in adult onset from what I can gather).

The tai chi DVD I got is (like most of them) aimed at older people so hopefully it won't be too difficult. I thought it might be a good place to start. The only yoga one I have is from years and years ago and is speed yoga. I used to enjoy it though, maybe I could watch it in very slow motion confused.

Let us know how you get on, and remember to take it steady! If a certain part of it is too painful don't be afraid to miss that bit! Supposedly up to a 4 is ok to continue.

daisychicken Sun 21-Jun-15 17:05:02

I'm ok with pacing Kinky until something unexpected comes up OR we have visitors for the weekend (tbf, visitors are my DPs and come Thursday eve to Monday aft which is too long but this is another story!). Having visitors throws my week out and my carefully arranged week becomes a week of hell whereas on a normal weekend where we plan and might have a day out but then a day to rest/potter (DH is an introvert like me and we are both homebodies (another issue that DM struggles with) so we like to be at home and not overload on activities iyswim), I've not figured how to work round this yet. Unexpected issues are easier to cope with as tend to be a one-off for a short period and I've realised that I may have to give something(s) on my planned day/week a miss (as much as hate letting people down). Thanks for the tens pad placement issue. I have the dual tens as well - I need to obtain new leads but will give it ago on my limbs. It does help my back somewhat but I find heat really good. I do have days when I think an electric chair tens would be so useful!!! grin

Gnome could it be fibro alongside the dystonia? confused you know how fibro is(!) my feet burn, an achy burn on the soles of my feet. It used to be if I wore different shoes but I found certain shoes such as my walking boots were fine. Now though, they burn pretty much all the time but the intensity is sometimes less. I do find myself going "stupid bloody fibro" rather a lot.... angry Might be worth trying the DVD, this yoga group "gentle yoga for over 50s and back pain"! I will let you know how I get on!

Gnome7000 Sun 21-Jun-15 19:09:40

daisy it could be some sort of combination! I'm walking on the outsides of my feet with clawed toes, it's pretty uncomfortable at times. Supposed to be getting supports to try and fix it, but I have to admit I can be quite pessimistic these days about the things they do to try and fix stuff.

kinkyfuckery Mon 22-Jun-15 10:23:09

You know when you spending months doubting whether your meds actually do bugger all? Then you accidentally fall asleep one night without taking them, and feel like death the following day? Yeah.... that is today sad

daisychicken Mon 22-Jun-15 14:10:37

Oh no Kinky sad I'm going to be very un-mums netlike and give you {{{{gentle hugs}}}} I do know the feeling though and dare not try to manage without my meds..

Gnome hope the supports help x

My hands are so painful today. Heat helps a little so I've been hugging my cuppa! Anyone else find heat helps? I'm sat with a heated pad to my back and I have a heated bed pad to sleep on when it's cold (too hot at other times) but I really need some thin fingerless gloves which are heated!!

RedandYellow24 Mon 22-Jun-15 14:15:05

Spoonie here too similar conditions plus others! Support thread be good. Does anyone else have paid carers? Seem to be very few mostly people have partners family or manage on own. Hate needing help but carers can drag so much of your day and engery! But can't cope without them either

daisychicken Mon 22-Jun-15 14:28:22

Hi RedandYellow I don't have carers paid or otherwise, DH helps but works full time so tbh, we muddle as best we can. My DC have a couple of jobs in their "chores" which help me hugely ie dc2 hoovers 1-2 a week and covers at least downstairs. The house is maybe not as undusty and clean as I'd like but it'll have to do! I'd love a cleaner! That would be a real help!

We are renovating the house - well I say the royal 'we!' I mean DH! - and I'm trying to make sure we make things easy for me ie downstairs toilet, shower instead of a bath (I find getting in and out of the bath hard), boxing in tops of kitchen cupboards to get rid of dust traps, finding places to store a vacuum cleaner upstairs and downstairs etc..

Gnome7000 Mon 22-Jun-15 16:45:06

Aw kinky been there, it's awful! I now have alarms on my phone so it can't happen and those daily pillbox things for moments where I can't remember what I did 5 minutes ago.

Thanks daisy! Just got my appointment through for mid July so not too long.

Hi redandyellow! I don't have carers but I get a lot of help from family, fortunately. If I didn't I'm not sure what I would do!

kinkyfuckery Mon 22-Jun-15 18:22:57

Yeah Gnome I have the pillboxes, and took them up to bed with me, as I was planning on reading for a while before sleep. I need to admit defeat and stop just relying on my morning and bedtime ones and go back to taking painkillers during the day too sad

Hi redandyellow smile I am a single parent, and have two DC with SEN - any paid help would be a dream haha. Do you mind me asking what other conditions you have? Do you claim manage to claim DLA/PIP?

Does anyone else?

daisy I cradle a hot cup of coffee pretty much constantly as I find it does help my fingers a bit. My pain is always so widespread I'm not sure what good heatpads etc would do, unless I just wrap myself in a heated blanket all day lol hahaha. I try to take a hot shower before bed or in the evening at some point and that's nice for that brief time - really tires me out though, and some nights I just don't have the energy (or ability to stand that long) A bath helps too, but I struggle to get in and out, so that's a rare thing.

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