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/

Moose so sorry you have relapsed and are still in undiagnosed limbo land. I remember chatting to you some while ago when it looked like you would get MS as your DX. I am doing reasonably well at present (by CFS standards) and am coping with working one day a week without the worst of the uselessness that used to take up best part of a week to recover from. I think I told you I have a strange episode of fit like collapse about a year before I became properly ill. I have since realised I have POTs (postural orthotic tachycardia syndrome) which I think is more common with HMS. Fortunately I have done reasonably well by just drinking lots and increasing my salt levels. Its just another autnomic thing that doesn't work as well as it should! I have also felt better since taking D-Ribose - a supplement used by bodybuilders to help with muscle recovery. It is all such hit and miss.
Anyway sounds like you could do with a hug(())

Thanks magso. I do feel like a need a hug today, but then again, when ds1 decided to lean on me earlier, it hurt my joints and muscles so badly I think I'd cry if someone gave me a non-virtual hug.

I am so pleased to hear you are doing so well. It gives me hope and reminds me I won't be feeling like this forever.

I know the best thing I can do is improve my diet, but just don't seem to have the self-discipline to do it just now. It feels like with everything else being so crap, giving up nice food, which is about the only pleasure I have these days, would be the final straw, iykwim. It's ridiculous, as I know it's a means to an end and would be worth it long-term. I think I just need to give myself time to get into the right head-space, but at the same time I get so cross with myself for being so lacking in self-discipline.

Moose yes you have been more before, chances are you will get back less ill -- and don't beat yourself up! For the moment you just need to survive the bad days and start to get more well. That means rest and sleep and letting others do the rest. I know its tricky with children to care for - especially the very young or ASD dcs that do not understand or cannot yet do things for themselves. Have you heard of the shine protocol (Teitelbaum from fatigued to fantastic - I was tempted to buy it for my gP but thought it was too cheeky) ? S is for sleep - the first thing to get as good as you can. N (nutrition) for diet comes a little later.
I got pins and needles in my hands and feet ( and wrists and ankles), when I was more ill but that has gone now. Just something else not working as it should I suppose. I hope you have seen your GP. Do you have anything that helps with the pain? I was given a very low dose of amitriptyline by the CFS doctor here, which is helpful for neuropathic pain and it does help, although I wasn't sure at first. I had to start on a tiny dose (half a 10mg tablet) because peeps with CFS tend to be very sensitive even to small changes. Its very frustrating when the medical profession are unable to help. Once you are feeling more well, would your GP be able to send you out of your health area for ME help? I know you don't have a dx, but you have something and CFS seems to be the Dx given to people who are ill but don't as yet fit other boxes!! In our area the chronic pain clinic staff also see patients with CFS.
Along with adding various supplements I have been seeing a chiropractor as my back is always on the verge of ceasing up. She believes that compression of spinal nerves can contribute to functional loss as well as the pain we are trying to reduce. I've been going for several months now and am functioning better but the pain is not yet improved.
Hope you make steady progress! I like the phrase Cog Fog - and my foggy brain can spell it!

moose, did your SPD continue after pregnancy? It's been nearly 2 years since DD was born, and I've had continued mild twinges (saw the physio a few times in the first few months) since. Then a few weeks ago I apparently knocked my pelvic joints out of alignment, triggering an acute episode. The physio said some people's pelvis's are just more prone to it, and I guess having it happen during pregnancy can set it up for the future. I'm still breastfeeding, and have hope that it will all go away once I stop. But a bit worried it won't.

I remember seaching out D-ribose before (probably from this thread), and it says don't take while breastfeeding, so I'll have to wait on that. And hey, hasn't someone said (magso, was that you too?) that CFS might be related to defects in mitochondria. D-ribose is a component of ATP, which is the energy molecule that the mitochondria make. So perhaps taking it helps out by providing more of the building blocks. And with that thought, what about adenine, which is also part of ATP? Oh, google tells me that is Vitamin B4. I'd already heard that B vitamins can help. The health food store is having a sale right now. I might go buy myself some...

And I'll send you another virtual hug, moose. I hope you can find somebody that takes an interest and pays attention to all your symptoms. Back when they diagnosed my dysautonomia, it was only because the cardiologist I had originally been sent to thought I was an interesting mystery, and I was able to go back to him after been fobbed off by endocrinologists, neurologists, and others, and he apparently had chatted about me with his friend in the meantime and came up with more ideas to test, and was eager to do so. But it seems like you can only luck into things like that. If he hadn't been curious, that would probably still be undiagnosed for me.

Oh, and I saw you had nerve condunctance tests -- was it that horrible thing where they basically electrocute you? That was massively painful. Mine came back normal too (that was back during the dysautonomia investigations).

magso, I haven't been to the GP this time. It feels like there's no point.

Sleep is an issue. I need to get a lot more of it, but got into the bad habit of using co-codamol to knock myself out as I developed insomnia, I think through anxiety around bedtime, worrying about whether or not I was going to have another night-time episode. I'm off the cocodamol now, but sleep still isn't great. I either sleep like the dead and wake up feeling worse or struggle to sleep at all.

Spinal nerve compression theory is interesting. I had a serious neck injury when I was 18. Ridiculously, it was caused by doing a workout. I turned my neck too far when my dh (then boyfriend) walked into the room and two of my vertebrae popped out and kind of got tangled up. I was stuck immobile for 6 weeks, even having to be carried to the bathroom etc. Then when I was in my early 20's I kept having bouts of torticollis, where my neck would seize up and lock with muscle spasms spreading down my spine until eventually half my upper body was frozen. It was so painful, but noone ever investigated it, I just got given a standard foam neck-brace and anti-inflammatories. My neck is very cruncy-grindy and still locks up sometimes, but I haven't had the torticollis for years now - thank goodness. My osteo felt the neck issue was a very likely suspect as a cause of my migraines.

raggedy yes, I still had SPD quite badly between ds1 and ds2. It did improve when I stopped breastfeeding, but the only thing that really worked was the osteopathy. I had the course of treatment when ds2 was about 6 months old, iirc and only had a very mild case of pelvic pain when I had dd 4 years later. I still have the odd issue if I do something daft like try to use my foot to scrape a bit of dog fur off the carpet (sideways leg sweeping motion) but I suffer from far more hip pain than pubic pain these days.

Yes the nerve conduction test was agony, not least of all because the guy ramped up the amps or whatever they're called because he couldn't get my left foot to respond. According to my neuro the results were normal, but I find it very interesting that it was the foot that developed complex regional pain syndrome just a few months later that wouldn't respond to the pulses.

Unfortunately, they picked the time to my MRI, LP and nerve conduction tests when I was at my most fit and healthy after months of concentrated effort on healthy eating, exercise and supplementation. I was actually fit enough to be doing interval training 6 days a week, had lost 4 stone in weight and was solid muscle. I think that's what's making this relapse (although in all honesty it has been more of a gradual decline over 12 to 18 months and then being tipped over the edge by flu) so hard. I can still remember what it feels like to be fit, clear headed and full of energy. I mourn it to be honest and can't face the uphill struggle to get there again. I feel like all their blooming tests robbed me of my health and now I'm back at square one.

I honestly don't think I am diagnosable, I'm just a physical and as a result, mental wreck. There are just too many things wrong and no-one wants to view the problem holistically to see if there's a common cause for the majority of them.

Sorry, I am feeling really sorry for myself just at the moment. I'm not normally like this, I promise.

I stumbled upon this video , which is about sleep for people with CFS/HMS/EDS. It was a bit of a revelation for me, actually - I think this is what happens to me.

Be warned it's half an hour long and quite academic... But if you're someone who's trying to make sense of why you're tired all the time, I think it's worth the effort.

Flow listened to that video- it makes a lot of sense to me. Even burnt the tea listening to it. I don't have EDS (was hypermobile) but since becoming ill have been oversensitive to adrenaline.
Raggedy it might have been me. I really did not expect the D ribose to help so stopped when my first bag ran out - and got more ill. I still did not really believe it was that that was helping but got some more and tried again, somewhat half heartedly (forgetting it for periods of time). Now I am reasonably certain that it helps me!! Not a double blind study though!
Its such a shame we have to find our own way. The book I mentioned placed heavy emphasis on getting good quality sleep, using, pain relief, sleep hygiene, various sleep supporting herbs and natural remedies (including D ribose 5HTP and magnesium) and lastly low dose medication. it suggests using a range of remedies in low dose to reduce side effects.
Moose if that theory is correct (over responsiveness of ANS as body overtired/ill/pain) I suppose painful and tiring tests could well have made you more ill. Actually I always felt I went into hospital less ill (with pneumonia) than I came out - after a lung biopsy and arresting. That was the start of my 'CFS' -so I understand your wariness ( or should I say weariness) of the medical profession. You are right we need a more hollistic approach!

Interestingly I have just bought some 5htp and l-theanine for both myself and my puppy ... he's a rescue with separation anxiety and fear of other dogs.

Then I discovered dogs don't do too well on the higher dose 5htp, but suit L-tryptophan better, so re-ordered a dog remedy containing that instead.

So, I now have two months worth of 5htp to try and see if helps. I did take it for a while a couple of years ago, but couldn't make up my mind.

The L-Theanine is more for anxiety, which is also really bad at the moment.

I was also taking high dose magnesium (with calcium and zinc), vit D and B vits when I built up my health and fitness, so really need to start doing the same again and see if it helps. I will look at adding D Ribose into the mix as well - in for a penny ...

Just blubbed all over dh when he got in from work. It just bubbled up, I'm so tired and sore all over. I told him I feel like this relapse heading for being as bad as my first ever episode (which involved a prolonged period of being bedridden and being fed complan because I was too weak to eat) and think he might finally be starting to get it. Up until tonight there's been much geeing up and 'oh you'll be ok', tonight he's talking strategies and how to manage the house, kids and dogs. We're looking into dog walkers and I think a cleaner is also going to be a must this time around. Fortunately he got a new job a couple of months back and his salary has gone up quite a bit, so we might be able to manage both.

I'm scared to be honest. None of my relapses have ever been as bad as that first one, which was roughly 25 years ago now. Back then my biggest worry was not pissing my boss off by taking extending sick leave. (I did piss him off by the way. He insisted I came in and explained exactly why I was off. I went in dragged myself along the corridor, with dh holding me up and collapsed at the bottom of the stairs just as my boss came down. He went grey with panic, helped me to the car and told me to take as long as I needed - and he was a really old-school hard nosed MD of a manufacturing firm so I must have looked bad.) Dh was at uni, so around to nurse me and walk the dog etc and I didn't have any dcs to worry about. Now I have 3 dcs, one of whom has ASD and two dogs, one of whom is an 8 month old puppy with behaviour issues that need sorting. I don't have a clue how I'm going to cope.

I will watch the video, perhaps tomorrow. Thank you for the link. I tried reading an article on dog behaviour this afternoon - nothing high brow or that I didn't really know already, but it just wouldn't go in. Then when I was trying to order the supplements I couldn't remember dosage levels, even having the shop open in one tab and dosage in another and flicking back and forth, but the time I opened the shop tab I'd forgotten the dosage I checked half a second ago.

Dh is making me a healthy salad for tea. He's also just force fed me floradix, bless him.

Well at this horrid stage you really need someone else to take charge and tell you what to do! (Rest/ supplements/eat etc). Cleaning and dog walking help is good. I have a home help, (I know makes me feel ancient) who would do what was most needed, like check the fridge or shop. Now I am quite a lot better she only comes once a fortnight and helps me with chores I struggle with alone - usually cleaning up ds room ( he's a drawer emptier type - also asd) When I was sicker she came weekly and I was often resting and just left her to do the essentials. Childcare is another area to look at. We don't have a dog but ds (who loves dogs) needs to run off energy just as much as any four legged friend ( and I couldn't take him). A couple of neighbours let him 'help' with the dog walking which was brilliant. Two birds with one stone - rest for me - exercise and fun for ds, and the dogs kept him in order.
I was told pantothenic acid ( I think it is a B vit I take 200mg a day) is good for prolonged stress. ((hugs))
Hope you sleep well tonight everyone

I know I need to make myself relinquish control, but am really struggling. Looked at between 15 and 20 dog walkers yesterday and only one even came close to being someone I could trust with my dogs. As for cleaners, I need to get past the mortification of how bad the place has got over the last month or so. I suggested to dh that he gets the upstairs straight and we just employ them to keep on top of the bedrooms and stairs, as when I can manage to get some housework done I always run out of steam before I get that far, so the downstairs is usually just about passable, but the bedrooms are a disaster area.

Ds is of the 'everything on view' ASD persuasion, despite being OCD re health and hygiene. He can't put anything away, but has to have it all in a specific place or he can't sleep - so having a cleaner in his room might not work out, which is a shame, as the boys' room is the one that really needs keeping on top of.

Ds1 is out of the house from 7.20 until 5.00 pm during term time and ds2 and dd are very good, with ds2 regularly being such a fab big brother and taking dd upstairs to watch dds after school if I'm having a very bad day. He is such a star - he sat and did 6 Bob the Builder jigsaws with her yesterday when I needed some peace and quiet and often does drawing and colouring in with her at the kitchen table. Ds1 used to adore her too when she was a baby/toddler, but they've done nothing but fight since she grew old enough to have an opinion and not do exactly what he tells her to. They really rub each other up the wrong way.

My Mum is very good - she took them out to a cafe for milkshakes and cakes yesterday afternoon and has offered to have them for an afternoon at the weekend. She did most of the school runs for me when I had the flu for two weeks, despite being booked in for a second knee replacement in a few weeks time, but I know she struggles with pain, so I don't like to ask too often.

Dh has booked tomorrow off, to give me a break. He was initially thinking we would go out as a family, but I had to spell it out for him that I am just not well enough to go out at the moment. Think he's finding it as hard as me accepting how bad this relapse is.

I'm still struggling to get my head around the fact that I'm stuck with pain everyday.

I've got an appointment at the hospital Monday morning for a hip problem they have been trying (half heartedly with a bit of physio) to get to the bottom of for a couple of years. Last physio thinks I need a scan - lets see if the consultant agrees or fobs me off.

Then I've got a gp appointment in the afternoon where I'm going to try and explain that the main pains of TN are being modified by the medication, but that I'm still in pain. All. Of. The. Time. :(

2kids, I have a friend who has TN - I feel for you, it's supposed to be one of the worst pains known to mankind. She was told there is a surgical option - something to do with having the demyelenated (sp?) nerve wrapped in teflon? Unfortunately her scans showed it sitting too close for an artery so the NHS won't do it. Might be worth asking about though.

Dh's day off didn't go too well. I agreed to go out with the family to a local country park, although was staying in the car with a hot chocolate and kindle book while they walked the dogs and went on the adventure playground. I found the half hour drive there totally exhausting and regretted agreeing to go, but kept it to myself, as I didn't want to spoil it for everyone else.

Unfortunately ds1 had other ideas and after an afternoon of tantrums, entitled attitude and general rudeness I finally lost my temper with him and we had a huge fight, culminating in me banning just about everything he holds dear - not my finest hour - I just don't have enough energy to be calm and reasonable at the moment.

So, I've been curled up on the sofa under a blanket feeling dreadful ever since and he's not talking to me ... which is a first and does have it's upside.

Thanks, moosemama. I'd agree with the 'worst pain known to mankind'. I'm pretty strong, pain wise, I thought. But pre diagnosis, the pain had me crying and unable to sit still it was so bad.

I'm on the start of a long road for daignosis. A referral has been made to neurology, but I don't know what they'll choose to do. Usually an MRI to see if there are any causes like your friend has. Another friend of mine has the same cause and is considering surgery, but it's scary.

Currently I'm just trying to balance the relief brought by the medication with its side effects. I had middle of the night pain on Wednesday and took an extra dose (which the GP said I could do) and in the morning I couldn't walk straight with dizziness.

Sorry you felt bad on your day out. I did that the other week as DD had a dentist appt. DH was taking her but I felt I needed to go. Well, I was on carbamezapine and co-codamol and let's just say they don't mix. I was unable to keep my eyes open while waiting for the appt and was nearly sick in my lovely new handbag.

Sending thoughts your way.

At her worst my friend was found banging her head, hard, against a wall in desperation. She is on anti-epilepsy drugs now and they have worked for her - she hasn't had an attack in a couple of years.

Hope you get a decent neuro and they come up with a treatment plan that works quickly to give you some relief.

Thanks for the kind thoughts. Dh is cross with me for wearing myself out and has spent the evening panicking about how we're going to cope when the dcs go back to school next week. He then informed me he's going to be away for two nights the week after next, so now I'm wracking my brains trying to work out how I'm going to manage that.

Up with insomnia again! :( This is seriously not helping...

2kids, I had never heard of your condition. It sounds dire :( I hope they can help you.

Ugh, moose, that sounds really unfair that your DH is cross with you, as he was the one who wanted to go out! Regarding cleaners and feeling embarrassed, I completely understand, but I can report that when we had a cleaner come in when I pregnant and couldn't walk, and the house had gotten into a truly terrible state because DH couldn't clean either, she didn't say anything bad and just got to work. We had her for 2 hours every 2 weeks, and it took a couple visits for her to sort of catch-up. I suspect they see at lot worse more often than you might imagine.

And did you get osteo on the NHS or go private? My physio is private, and he's a 'manipulative physiotherapist', unlike the ones I saw on the NHS who just give you exercises, he actually presses and pushes and moves the bones around. I was recommended him by a friend who'd also had SPD. I suspect it might be a bit similar to what an osteo does, just less, um, gentle. Although I wonder if a gentler approach might actually be longer lasting?

I've freed up my calendar so I can take Tues and/or Thurs off if needed. Handover is on Friday, and DH is still confident we can do it all in time and says we can't delay the date. Friend with a van isn't available, but DH measured and thinks we can get the big objects in the car with lots of individual trips (it had been set up as a show-home, so there is a sofa and bed and stuff like that). I kept pressing for him to look at hiring somebody, but he says it's too short notice. Trying not to stress, as he is so confident. We're going to try to move the sofa tomorrow (today!), and I really hope we can find a neighbour to help carry it, as I think it will be a farce if it's just me and DH.

Found out I made a major mistake at work back in Jan in my first week back after the holidays. I have no idea how, as I caught several similar issues that week and the next, but this one slipped through. Feel really bad, as it effects someone else :( I've admitted my mistake to the relevant people, and just hope that it can be fixed higher up. I'm surprised I'm not more stressed, but I think I'm reaching saturation on the stress front.

I went privately for osteo. By chance we had an osteo with a fantastic rep just across the road from our house. We'd already used him for cranial osteo when ds2 was newborn - he went from screaming 24/7 to a content and happy boy after the first session - so felt it was worth seeing if he could help me as well.

It wasn't like your physio, just the lightest of touch, so I could barely feel a thing, but it worked. Dh later saw him when he had Labyrinthitis. He worked on him cranially and he was back at work weeks before the GP predicted he would be.

I was a real sceptic before we went to him, but it really does work. Dh was so impressed that it's is dream to retrain as an osteopath and set up his own practice.

Hope you manage to move everything ok. We hired a small box van and dh drove when we moved house. It wasn't too expensive and we fitted the contents of a small 3 bedroom house into it.

Feel like crying today. Have had a nasty cold all week and a load of work to do before I go back to work tomorrow (FT teacher). Fibro is making me feel like I've been run over. Was asleep 12 hours and still feel shattered. Just want to curl up under a duvet rather than embark on 8 hours of marking and prep. I've worked in bits all week, but it has been such a struggle. Normally I manage okay, but this time I'm really feeling it.

Oh, sorry you feel so crap Kinky :(

Can you take the work to bed so you're at least warm and comfy while you work?

And don't forget to take regular breaks even just for five minutes lying down with eyes closed. It might seem like a waste of time but it's better than pushing through several hours without stopping xx

Thank you fuzzpig. That's a good idea. I'm really struggling with focus today.

Hello to the newbies.

I've got a week off university and placement which will hopefully give me time to rest as well as write thousands of words. Or perhaps I am being too optimistic!

Hope you managed sufficient preparation without getting too worn out Kinky. Best wishes for next week.
"Kids I feel for you with TN. I hope the new meds help.
Fuzz and Giraffes how are you doing? I'ver had a funny halfterm - sort of slid backwards a bit.

Have you been on half term, Kinky? Sorry you've been feeling so rubbish. We start ours this week and I'm glad as it gives me another week to play around with my dosage before going back to work next week. My class are lovely, but they need me at my best!

I stupidly decided to drop a dose last night as I keep having these doubtful moments where I think " it couldn't have been that bad, I can have less medicine and be fine" - well I really regretted it when I was woken in pain at 3, 4 and 5am. Back on the 3 lots and see how they cope.

Hope you managed today, kinky. And I hope you can get the pain under control somewhat 2kids!

We managed to move the big items in the car. DH got a local teen to help load, and we did the easier trip into our new house together. Absolutely exhausted, though. And I believe I have knocked my pelvis out of alignment again -- moving a small, but heavy, box. As we still have several trips left of little things this week, I figure I'll just keep carrying stuff and go to the physio again, red-faced, next week.

It's annoying, as I have several long walks required at work this week, including one where I'm giving someone a tour. I used a walking stick today and did need it (I know, as I kept thinking I didn't really need it, and so carried it for a while, and then regretted it). I'm going to be embarrassed if I need to use the stick when giving a tour. But I suppose it would be more embarrassing to collapse in pain halfway through.

Very encouraging to hear your SPD was mostly fixed, moose. I don't know if I should seek out an osteopath, or just keep going to the physio. It was pretty much better, which is why I didn't think about it, and then obviously lifted in the wrong way. I think if I don't do silly things like forget to be careful when moving house, I should be reasonably okay.

Oh no! Had to go to the gp today as I could no longer cope with the side effects of my medication. I was fed up of feeling permanently spaced out and on top of that today I was too dizzy to drive again and really drowsy. And I had a twitch that is really irritating and stops me doing everyday things.

GP straight away said to come off the tablets and to start new ones. BUT I have to go cold turkey first! 2 days of no medication at all is very scary. My major pains come at night - about every 45 minutes - so it's going to be an interesting couple of nights.

On top of that - at the orthopaedics appointment, the consultant looked at an x ray I'd had taken 3 YEARS AGO at the start of my dealing with my hip pain and being referred to physio/hospital/physio and diagnosed my problem straight away.

Why that hadn't happened 3 year ago I don't know. I need steroid injections and then possibly keyhole surgery.