Spoonies... friendly support for anyone 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.

Spoon Theory Here

Old thread

Good to hear from you grockle. Let us know how you're doing.

Welcome islander. We're going to take a 2yo on a flight to the US this summer. The whole trip is going to be a massive spoon-drain -- but my Mum is seriously ill and I can't justify putting off a trip until the winter just in case it's my last chance to see her :(

Congratulations on the weight loss, magso!

I'm trying to lose weight, but it is hard. I keep having to forgo exercise for lack of spoons, and as part of my new plan is that I barely have any supper (I'm rarely hungry in the evening, I tend to need a snack about 5pm and then nothing), DH and I keep having conflict over this he agreed to it, but it turns out he's basically incapable of making himself (and DD) food unless it's already packaged up, and I haven't been able to produce the needed 10-15 leftovers on the weekends due to overdoing it. Yet if I cook supper, then my body wants to eat some. And even if I just smell it I don't entirely understand, but I know I'm not actually hungry as I have no desire to eat until I smell DH's warmed up food and then my body does all sorts of tricks like make me dizzy and freezing and weepy in an attempt to get me to eat. I've actually started shivering with clacking teeth -- does this happen to anyone else? Or is my body the only one that shuts down its metabolism to try to force me to eat? And doing calorie counting, I am definitely getting more than enough calories in the rest of the day. In fact, I think I need to cut down there, too.

Turns out that DH slept through the fair on the weekend. So it didn't matter that I thought I couldn't go -- this is what I hate! He gets upset with me for not wanting to go, whereas he might still not go for his own energy reasons. I wish he could respect my awareness.

Hi everyone,

I was on DLA but because Royal Mail lost my special delivery renewal forms last August, the DWP made me then start the PIP application instead. The DLA forms were then delivered 2 weeks later, but DLA told me it was too late and I had to transfer over to PIP. Then I waited 8 months for my PIP home visit medical, but it may be less now and may well be a shorter wait if you are able to go to an assessment centre. We're now waiting for the decision, all you can do is keep phoning them and chasing them : (

I'm on Tramadol 4 times a day so shocked to hear I'll no longer be able to have it on my repeat list! I use the online ordering service my GP surgery provides, but you can only order repeat meds this way - I guess that means I'll have to take a trip to the surgery and see my GP every month to get my Tramadol then?! How ridiculous : (

I'm Bea btw : ) Have seen this thread before but didn't realise it'd moved to the PwD section - I've had M.E/CFS for over 20 years since I was 11, I also have a pelvic disability caused by pregnancy with my dd 3 years ago and osteo in my back so generally everything is very weak and painful. I'm struggling to cope with my dd at the moment, I don't have the strength to stop her doing things or pick her up and if I try to the pain is just searing in my pelvis and back. Weight bearing is basically impossible for me. Looking after her is pretty impossible by myself at the moment as she just won't do ANYTHING I need her to. Runs away knowing I can't catch her, won't eat, brush teeth, hair, get dressed etc and I don't have it in me to do anything about it : ( The other day we went to a friend's and she wouldn't leave. My friend had to put her in the car for me and she was naked because the kids had been in the paddling pool and she'd refused to get dressed. My friend tried to help me but dd was just kicking and running off so we gave up. Then as soon as she was in the car she just un-did her seat-belt and jumped in the front seat. She only got in the back again for the journey home because I said her friend couldn't then come to play at ours next week and she now knows I'll follow through with threats. But it's exhausting, and I'm seriously thinking of finding someone like a mothers help or PA because I have no idea how I'll cope with her on my own once my dh starts his new job in 2 weeks and is gone 12-13 hours a day : (

Hi guys

I'm suffering. Not taking my scooter or a wheelchair this weekend was a big mistake. I figured that while i would be tired on crutches, they'd be easier to manouvere if it was muddy. Which it wasnt.

So I'm still recovering, and DH is miserable that I had 'a holiday' and all I'm doing is moan about how bad it has made me :(

bea, that sounds so tough. There's no shame in getting a mother's help if you can afford it -- it sounds like it would be worthwhile!

In the meantime, can you try to get your daughter to play games in a way that helps you? For example, "I bet you don't know how to brush your teeth, do you?" And see if she 'rebels' by showing you she can do it? Sorry if that's a silly idea, and disregard if it's obviously not right, but I'm trying to think of something that might help. I find I spend a lot of time talking to my DD (almost 27mo, so a little younger than yours, I think?) and it really helps to get her to do stuff if I challenge her on it.

Sorry to hear that you got so tired out, beyond. And it seems your DH doesn't understand -- a holiday for us is a lot of work! Do you think he ever might get it? I hope that you recover soon.

Oh, sorry, that bit about talking doesn't make sense, does it? I mean that I find I tend to talk DD when I can't do things like pick her up or get up and play with her like other Mums do, but if I keep up an almost constant chatter, it keeps her attention. It does get weary, though!

Bea that sounds really hard. Getting help with housework and childcare was the start of getting slowly less ill for me. Ds (much older than your dd but because of his LD and ASD is more like a pre schooler emotionally and self care wise- just much larger) became extra oppositional and demand avoidant once I became ill, he really wanted me do everything for him, (he's always needed to feel in control)- it was as if he was trying to get his fit mummy back, rather than the weak, forgetful, slow one than had changed places with her! I have no experience of parenting an NT child - only a very oppositional autistic one! However things did improve once someone else was routinely helping with things that had to be done - like the dreaded homework!! I put up picture charts (with wipe clean surfaces so we could stick stars on) with the order of dressing and washing in the relevant rooms, and left him to dress himself, (with me close by to intervene before frustration caused a meltdown) noting happily (star on chart)each stage achieved (pants on - well done and star on chart) and helping discreetly (with the hard bits). Eventually I was able to slowly do less (cheering/prompting/helping) and now he can dress himself without fuss - well he is 14! He still needs help with socks occasionally- but we can have fun with that. He likes a challenge so I added a kitchen timer to beat (obviously would only work if a timer does not add stress). He also liked to compete against me in a fun way. He tends to dig his heels in as soon as he is asked to do something! He needs lots of warnings so that he knows when things are needed or changes are coming. I let him know that he will need to do something (ie put his shoes on to go out) in 5 minutes time. Then he is less upset by the need to change what he is doing.
I realise that a tired 3 year old is quite different but just in case any of the above has ideas that click with your dd well hopefully something will. I felt very alone with Ds challenging behaviour and its even worse when ill and with low energy!!

Hi all, I lost you when the new thread started!

I'm struggling... even on my "good" days, I don't feel good. I have a doctors appt on Monday which has taken me 4 weeks to get and I'm hoping we can change my meds.

Can anyone tell me about scooters? I'm struggling to walk any distance now and we are thinking that maybe a scooter would be useful. I'm just wondering if there are any disadvantages or things we should be aware of and if "light" scooters are light enough to lift..!

Bea - if you can afford to get help then get it, I think it would be worth every penny. I agree with Magso's comments re starcharts and I also found a "picture timetable" for bedtime/getting up routines helped my ds1 with getting things done when needed - it was just pictures in order of when things needed to be done ie in the morning: eyes open, breakfast, teeth, shower, clothes etc DS1 responded well to that alongside a star chart. Is your dd in nursery/preschool or will she start in Sept? The routine from that might help too.

Ugh, just back from second meeting with specialist. Well, they're done with me. "Nothing physically wrong". Time to think about graded exercise and talk to a psychologist.

Not sure what that's going to do -- not give me energy at least. I had hope since I don't have classic ME symptoms, I might have some hints of something else. But apparently not.

It's very frustrating that since I'm holding down a full time job and manage to squeeze by in my life, that it seems I don't really seem to have anything 'wrong', at least by their standards. Yet my life consists of nothing BUT my work, and I'm not really even managing that.

Sorry, just venting, and as I'm off work for the appt and DH is out with DD somewhere, I'm going to take this chance to nap.

Murmuration is the psychologist part of a CFS team? Our local CFS team had 3 team members from different specialties (physio/ OT/psych) and they all seamed to have similar roles - that is help us the see what needed to change (step by tiny step) in our lives to get more well. For me (allocated the OT) that meant accepting I was ill, and learning to do less - in order to not get so exhausted I literally keeled over, or could no longer speak/ eat/ stand. I think another person reminding me I was' ill not lazy' (and that pushing myself did not seem to be working) was helpful. I had to record what I was doing each day - so I could see for myself where I was over doing it, and think ways around it.
Before I was Dxed with CFS by the specialist, I was sent to see a pysch who tried to DX me with sev depression - a dx I never accepted because I knew that I wasn't!! (I also have POTS - undiagnosed at the time so would loose consciousness sometimes - always related to physical things like standing still too long, or trying to drag ds back from a road - most inconvenient!!- once I knew what to do to avoid fainting - life got much easier).
I must admit I really wanted to find a DX that was not CFS/ME - ands its really disappointing to be told that all the blood tests are 'normal - ie no much better understood and treatable conditions are to blame for the symptoms! Its kind of better to see it as - OK -they've ruled out XYZ. Its not that there is nothing physically wrong - more that the tests have only ruled out things that can be ruled out by present tests. ((Hug))

Thanks, magso. He was a fatigue/lupus specialist. I was too tired and fuzzy headed to think clearly, I'm afraid, so I don't even know what tests they did :( I had been under the impression after the first visit they were going to do a 'standard screen', which my GP had already done but they did not have access to, expecting to find it normal, and then investigate further. At the second visit it felt more like, "hey, ho, we're done with you." I do hope they did more than my GP originally, to rule out more stuff.

I find it weird that I have a known dysautonomia, and yet they say I don't have anything physically wrong with me. Clearly I do, as without medication I go tachycardic with mild exertion. I have a sinking feeling no one believes me on this one, as it is just so weird. My heart rate regularly goes over 200 without meds, yet that probably sounds so outrageous that maybe they figure I'm making it up. I suggested to my GP that I could stop the meds so people could measure it :) The last time they did (in the States) I had a whole floor of nurses over to look at my 198 bpm, as they had "never seen a heart go so fast yet without abnormalities before".

I've been to the GP, and let him know I was disappointed. He will refer me to a CFS/ME nurse, who is meant to be able to help me manage fatigue, which maybe will help me stop crashing so much. He's also going to wait for the letter from the fatigue specalist, and then refer me to a neuro. There is just a niggling worry about MS, which would be massively unlikely as I would have had to have had it for about 10 years now in which time it only progressed microscopically (there are some weird neuro systems that precede my fatigue, some of which have gotten mildly worse over the years), yet it would be nice to rule it out so I could get it out of the back of my mind. We'll see if anyone actually sends for me an MRI or not.

They do keep talking depression, which is frustrating as I'm sure it's not. I've had depression, and I'm not depressed now. This morning I took about 5 online depression scales, and got things ranging from "absolutely not depressed" to "likely have a problem" depending on how many questions they had about mood vs fatigue. Is it possible to depressed but not unhappy?

Sounds like you have your next steps worked out and a lovely GP murmuration!
I think it is possible to not be aware of depression - but if you have a known dysautonomia its incorrect to imply there is nothing physically wrong! Depression can cause exhaustion and result in deconditioning - but so can other things. Being ill and having the HCPs around you not only not understanding how to help but assuming 'there is nothing physically wrong' is however enough to make any one depressed!!! Chronic illness and low mood can easily go hand in hand.
My CFS specialist explained that my POTS was almost certainly part of my CFS. I however think I have always had some degree of POTS -(was a fainty teen) just only problematic when ill (CFS), deconditioned or dehydrated/fasted. So I think he is right - but I also think I may have been predisposed to not be very good at autonomic control IYSWIM. I suspect we all have weaker bits to our constitution (like some always get tummy troubles or chest infections) and that's one of mine.
I hope the CFS nurse referral is helpful, and the MRI is forthcoming.

Those depression tests are not great... I've just tried one and questions included:

do you get to sleep ok & stay asleep? well yes, because I take amitryptiline but without it no..
Have you been feeling tired/or had little energy? Yes... it's one of the symptoms...
Do you feel guilty with family and friends or a failure? Well, yes because I can't do the things I used to do with the kids/housework/dogs/work but no, because I know it's not my fault
Do you have trouble concentrating? Well, yes but I'm exhausted & distracted with pain.... doesn't everyone struggle then?

So I figure it's easy to adjust your responses and get the result you want plus someone scoring the test may take the response they choose when in fact it could be down to something else...

I've just come back from my GP (not my usual GP but I've seen this GP before) and feel totally demoralised and thrown on the scrapheap. I tried Pregbalin after my last appt and had an allergic reaction, I've tried several other meds but either notice no effect or the side effects are awful. GP said there's nothing else she can give me and that I will have to manage with co codomol, amitryptiline and tramadol (if I can deal with the side effects). She's referred me to the pain clinic but then said you have obviously worked out pacing and know stress etc isn't good... etc which the pain clinic will go over with you - so I can't figure out whether it will be of help or not but... I have to wait 12-16 weeks for an appt to find out. And then she said "it's psychological and all in the mind"....

Summer hols start next week and as much as I love having my dc home and I'm relived that the routine of school and afterschool clubs are reduced... I'm actually dreading it cause I just don't know how I'm going to manage to do/take dc to activities, have dc friends round etc.. as I won't be able to rest as much as I do now. I'm struggling now.. so how will I cope for 6 weeks?

I came home from appt and cried... What has everyone here planning to do over the hols?

Oh Daisy I am so sorry your appointment did not go well ((hugs))- and that its such a long wait for the clinic referral. Gps have very broad knowledge but are not always experts in some of the more puzzling conditions. Pain (and fatigue) is such a difficult thing to live with. However pain clinics know that. There may not be magic wands but they are experts in pain management - and the difficulties that run along side chronic pain and illness. I honestly thought I had sorted out pacing - and I was really not at all hopeful referral ( to the chronic pain and fatigue team) would help. Indeed I thought at the time it was rather a waste of time - but slowly I did get somewhat better, but it took someone to point it out to me. And I suddenly realised that I was able to do things that I could not have done a year before. It also helped having someone on my side! I think it helped not to be too hopeful so perhaps I should not say too much - but it was helpful.
Holidays - hmm well ds has 8 weeks coming up because his sn school is being moved and the new building is delayed, so he has an extra week on either end of the standard holiday!! However he has 4 weeks of play-scheme with 3 days ( well 10 - 3pm) most weeks so that is amazing - we usually only get 4 sessions in the entire holidays!! They will take him swimming and to the park- things I cannot do. the first week will be difficult as it is before others are on holiday. Ds wants to go to Legoland and has cut out a token to get in free ( impressive for a child with his level of LD) so I think I will need to get in training!! I might see if a classmate can go. DH is taking the last 2 weeks off for our holiday.
I hope you get some ideas. I can't remember how old your ds is, but I find the childrens' showings at the cinema (if you have one near by) can be a relatively restful treat, without costing a small fortune.

Thanks magso I'm glad to hear that the pain clinic helped you. I've said I'll be open minded but yesterday I'd just had enough. I've actually made an appt to try and see my usual GP and to ask about the Fibro clinic in Bath - from the website, they use a multidisciplinary approach but won't see you if you've seen the pain clinic so I want to see if we can refer there instead as I wondered if being specialised, they might be the better option.

My two are 12 and (a month off) 10. The 12year old can go off with friends but the 10 year old is just starting to do that this summer so I will get some time when they are out playing. The cinema is on our list along with swimming (them not me) and other activities where I can sit and have a coffee/tea/ice cream/read a book so I still have to be active in some form but I can sit. It's the days out I'm dreading and I have promised 2 "big" days out. I'm sure once we are at that point, I'll be fine and will just keep trundling on(!)

This is about ME/CFS, but it talks about POTS as well

www.cortjohnson.org/blog/2014/07/17/mystery-longer-big-picture-emerging-chronic-fatigue-syndrome-dr-bateman-talks

Two Subsets
Dr. Bateman believes we have enough data to describe two subsets in ME/CFS:

POTS Group
An infectious onset group that develops autoimmune antibodies to the receptors that control the heart rate and blood pressure; i.e., the POTS patients.

Neuroinflammatory Group
These patients – a larger group – have widespread inflammation in the brain causing fatigue, reduced functioning, orthostatic problems (but not nearly as severe as in the first group), problems with sleep, cognition, and neuroendocrine problems.

There's a lot more detail in the article

ME/CFS may very well have an autoimmune component but I don't think it's helpful to suggest a direct comparison by citing 'cicrumstantial criteria'. The bottom line is that while there have been no auto antibodies identified, it is all supposition.

Hope everyone is manageing now the schools are on holiday. I took ds to legoland at the start of the week- pleased I managed but now paying for it- which is rather foolish as its only the start of the holiday! I had forgotten just how much walking is required! Fortunately we got a disability pass (ds has sn but it is the combination of the two of us that makes days out so difficult) so didn't have to queue much. I had thought we might only manage the star wars Lego display near the beginning and had warned ds of that, but the pass allowed us to do a bit more. I really struggled in the dark of the star wars display to stay on my feet!
Has anyone tried curcermen tablets for inflammation and pain? I have heard it can be useful but could only find turmeric tablets locally - don't know if it's worth ordering on line.

Hi, I hope I'm okay to join in here. I have Complex Regional Pain Syndrome in both arms, hands and shoulder, upper back, neck, lower back, left hip, leg and foot. Got it when i was 14 after an assault that left me with a broken wrist. Started in my left arm and has spread since then. I take the max dose of Pregabalin every day, OxyNorm liquid for breakthrough pain, Paracetamol, Oxycodone tablets twice a day for pain management and baclofen for the muscle spasms also have two types of laxatives for the blockages that the morphine based medicines cause. I'm constantly exhausted, I have painsomnia, walk with crutches, sometimes have to use a wheelchair. Every day is absolute agony for me. On the bright side, I start a degree course in September and long term will be moving to London (once I finish my degree that is) as I'll have much better job prospects down there. Hope everyone on thread is not suffering too much today

Eventful few weeks. I now have gabapentin added onto my list. And have found a brilliant dentist who believes me that anaesthetic doesnt work for me and gave me something different to try - so thats what local anaesthetic is supposed to be like! have been have dizzy attacks almost daily, still waiting for syncope clinic referral (need to chase that up)

Also, i have my genetics appt in the morning. And my wheelchair came today, having given up waiting for my referral (for the sake of £60 its not worth the pain!)

Hope everyone is okay btw

Welcome OnelittleLady. Hope the degree course is interesting, and your CRPS doesn't hold you back.
Beyond glad you have a dentist that listens and has found something that works for you. I didn't see a syncope clinic ( I don't think there is one here) but the cardiologist gave me several pointers that have been helpful and allowed me to get fitter ( I used to just faint if I tried anything remotely mildly like exercise - or tried to stand still), so I hope your clinic can help too. Things such as jiggling my legs (feet up and down) when standing or sitting still, and clenching various muscles. How do you feel about the wheelchair?
I am still recovering from my day in LEGOLAND. I had forgotten just how sore and weak I can get. I'll get there in the end!
Hope everyone else is managing. Ds has a fair amount of respite/ play sessions, but I find not being able to rest for long (the play sessions are quite short by the time I take and collect him) difficult. But at least they run off some of his energy!

Beyond hope the genetics appt went well?

Well the first week of the school hols whizzed by and tbh, I kind of coasted on adrenaline... it 'hit' me on the thurs night and I've been barely able to walk since... am just plodding on... This week ds2 is doing a cookery course so I will get 3 2hr coffee shop breaks waiting for him . Am seeing my GP (hope they don't pass me on to a student this time) and asking for referral to the Fibro clinic in Bath plus I'm hoping she can suggest a different painkiller to try...

I'm okay about the wheelchair, had already accepted i am using one sometimes and had applied to the nhs for one with them, just got sick of waiting (for one that i've been told is not really fit for purpose anyway!) so bought my own.

Genetics appt wasnt great, the counsellor didnt seem to know much about eds, was just filling in a questionnaire with me. Something about her made me feel very much like a hypochondriac, but im hoping the 'proper' geneticist will be much better.

Onelittlelady, what are you studying? I'm mid way through a human biology degree with the ou :)

Hello fellow spoonies. NC regular/lurker here with CFS. Am currently struggling with two related issues.

1. I think I need a mobility scooter or something. Used one during a holiday and it made so much difference. Can I ask what models and makes people have and how they get on with them? Happy to have PMs, of course.

2. Getting one is an emotional decision and seems very public. I look normal and indeed well most of the time. I've never posted about it on FB, for instance, and I feel like it is coming out in some way. I'm wondering whether to post a statement on FB about it, maybe with a link to the spoon theory. How do you all treat your illness and social media?

I'd be interested in mobility scooter info as well please. I agree about the emotional decision but it's also how others would react - sounds daft but most people don't know I have any problems and those who do, don't realise how bad it actually is so I feel nervousness about comments I would get and any extra attention (I don't like attention to be focused on me!) but as friend with similar difficulties has said... "You have to do what is right for you AND your family - so if it means you will be able to do more with the family, then it's worth it". I'm looking on ebay for a secondhand scooter - has to be lightweight as will need to live in the car... but how to choose the right model is confuddling!!

I got to see my GP.. She is going to refer me to the specialist clinic in Bath but I need to have the blood tests re-done plus some extras first so a bit of a wait while I get those sorted but it's in the process. No stronger painkillers... apparently the next step up is morphine and she feels it would be better if I can try and manage without for as long as possible - I do see her point and most days I agree... but not on the bad days(!)