Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

[neriberi]

Can I join the thread?

I've just read the spoons article and this thread and totally understand how everyone feels. even though I manage to live a relatively normal life I get hit with fatigue that puts me in bed for a whole week, I have a very understanding family and my place of work are generally good but unless I look like death warmed up no one seems to believe that I can get that tired, I always get " but you look ok?" and it drives me up the wall. I'm not looking for sympathy just a bit of understanding that even though I look ok (I put this down to being an expert with make-up) I don't feel it. I do wonder if people would treat / take me more seriously if I had a limb missing?

I have a really rare genetic condition called Diamond Blackfan Anemia. In a nutshell I don't make red blood cells and have bone marrow failure, I also have MDS. DBA is a complicated condition, severe cases are managed with blood transfusions and meds to prevent iron overload, however my DBA is pretty stable so I don't need the transfusions. As well as DBA I have a whole load of other problems that are all associated with the condition (deaf, heart abnormalities, weird kidneys, enlarged spleen, bone deformities, chronic joint pain etc).

I suffer all the symptoms on anemia and some, I get tired, I have chronic joint pain, I get out of breath, I can't sleep, I get night sweats, I can't put into words how awful DBA makes me feel, because my DBA is stable I'm considered to be a healthy sick person which is weird in itself. Having just read this back and feel almost awkward posting it, DBA isn't something I really talk about because people seem reluctant to understand it, because I live a near normal life people don't get that I can so low and tired and held back by it.

[Grockle]

Oh neri, that sounds horrible. This is a good place to talk about it, if you want to. It's very hard when you can do normal stuff some of the time but not the rest. I use a wheelchair when I'm bad because without it, I wouldn't get out, but I feel like a fraud because the day before I would have been walking (albeit a slow & hobbly walk). I am sure people think I am a drama queen. No-one has ever said that but I get the feeling that's what they think. I suppose I'm 'lucky' in that people like to point out how shit I look so at least I don't look like I'm ok!

[belleshell]

welcome Neriberi, this is exactly the right place, alot of us are faced with people saying you look ok, or are you just a bit tired. Never mind the pain, bowel trouble brain fog, nausea etc etc that we may also have to put up with on a daily basis...

Im like Grockle , i too look like shit most of the time, that i now get comments like ooooo u look well!!! its rare but i do get it!!

[fuzzpig]

Hi Neri, gosh that sounds really really awful. I don't understand the DBA (or many of the other illnesses mentioned on the thread) but I hope that as we at least all share some symptoms and struggles we can all help each other a little through empathy and understanding :)

Re: painkillers. I think I am quite unusual in that I don't take anything other than my daily amitryptiline. I am on 40mg, my doctor is reluctant to increase it once more to 50 but I'm thinking if I stop work I will go back and insist on increasing it. I think it helps me, certainly in terms of sleep.

I don't really take any other painkillers though, at least not on a regular basis. I reserve them (brufen and diclofenac) for severe headaches. Basically the reason is because I am scared of them! I have seen my mum (who was quite close to a dx of CFS herself at one point - I didn't know this until recently!) go through awful side effects and withdrawal, and the same with DH recently with his back injury - he was on 28 tablets on a good day, including tramadol and gabapentin, it was awful. :( My doctors have told me it isn't good to be on painkillers long term due to the effect on the stomach (this was spectacularly bad with my mum) as well as building up 'resistance' etc. I also found that even if the pain eased a bit, that made absolutely no difference to the fatigue and other symptoms :( so it was pointless. For me I mean, I obviously don't judge others for using them!

[ArbitraryUsername]

I take paracetamol regularly throughout the day, and naproxen twice a day, and acupan 3 times a day. And I can take up to 8 tramadol (2x4 times a day) if I feel bonkers enough like I need it. I literally couldn't take 8 tramadol. I would be a horrible mess. One knocks me sideways (any more wil make me vomit, every single time). I can take codeine though. I guess I should ask for that instead. I'd rather have it on it's own to take as necessary rather than in with the paracetamol. It does my bowel no good at all.

I hate having to try to explain to people that I really am ill, and properly ill at that. My colleagues try to be understanding but they really don't get it. And I can't tell my students (because who would want to?) so they're just ridiculously demanding. My programme director told me to pencil in 9-6 for interviewing later this month. She has no idea how hard 9-6 (which is really 7-8.30/9 for me with the commute) is for me. And 9-6 interacting with candidates and not being useless at that. Gah.

The local pain clinic are doing sessions in the local library for people living with chronic pain. I've been contemplating asking my GP for a referral but I'm a bit scared. They're 2 hour lectures in the evening. I'm not sure I can cope with a 2 hour lecture, especially not in the evening.

[CouthySaysEatChoccyEggs]

I don't know how bad my pain would be without the Gabapentin, because the joint pains themselves didn't start until after I went back onto it for my epilepsy.

The other symptoms have developed over a period of about 3.5years, since I had swine flu.

In July 2009, I got Swine flu really badly, and didn't get Tamiflu quickly enough. I recovered after about a month, but then between September 2009 and February 2010, I had 6 chest infections after another, which culminated in me nearly dying of pneumonia.

The pneumonia was so severe because I'm allergic to penicillin, Amoxycillin AND erythromycin, and I ALSO can't take any 'Quino' AB's because of my epilepsy.

And ever since then, I've not been 'right'. There's definitely a hormonal element, because it all gets worse the week before I'm due on. But it IS still there all the time too. The minute I overdo it (by good shopping FFS), I need a minimum of 24 hrs to recover.

The tiredness started straight away after the pneumonia. Then the cold feeling came about a year later. Then about 8 months after that came the muscle aches. Then another 7 months after that came the agonising joint aches.

Now everything is just broken.

[Oblomov]

Count me in. I have had diabetes fir 40 years and my consultant finally admitted that there is nothing they can do for me. I swing between being hypo, collapsing and my blood sugars being so high I am sick, often. I have chronic fatigue, low sex drive, high testosterone, low estrogen, lipids, thyroid, folic, vit b and d deficit. Feel like crap. My poor dh.

[CouthySaysEatChoccyEggs]

So would it be better to keep the pain under control properly? I was told to only take painkillers if I absolutely HAVE to. Admittedly half the time I just take paracetamol or brufen because I can't concentrate on anything except attempting to keep my eyes open when I take cocodamol or naproxen. And I can't look after the DC's while being asleep, though I can (albeit in a very short tempered, grumpy way) when I am in pain.

I only resort to cocodamol if I'm groaning with the pain, and naproxen if I would rather kill myself than be in pain like this.

I don't know, I would be in far less pain if I took the 3 naproxen every day that I have been px, but then I wouldn't be able to deal with the DC's during the day.

[belleshell]

Choccy eggs, have you been diagnosised with chronic fatigue syndrome!! and it might be worth trying a week worth of regular paracetamol and brufen if you have constant pain, see if you feel any better. ie 2 paracetamol 3 hours later 400mg of brufee then 3 hours later 2 paracetamol etc...if it doesnt make any difference then go back to what your doing!!

oh and sorry i was been rude...hello
xx

[neriberi]

Afternoon peps . DBA is similar to Fanconi's Anemia btw.

I'm at work (on lunch), so please forgive if my post is a bit rambled or frantic-ish, I've been wanting to offload a bit since my diagnosis but haven't felt able to.

I joined a couple of DBA support groups a while ago but still haven't been able to offload because compared to some of the amazing people I've meet at the support group,I've got off very lightly and feel like a complete fraud and imposter talking about how it's effected me physically and emotionally when there are others who are so much worse.

The last few years have been a rollercoaster ride, I wasn't diagnosed with DBA until March last year, however it's a condition your born with but because of the nature of the condition you can be born in remission and stay in remission until something triggers a relapse, my relapse was caused by the birth of beautiful son. But its a bit more complicated than that!

DBA is caused by a genetic blip during fetal development, anything can trigger the blip, my blip was caused by the RPL11 gene having an off day, all of the other problems and abnormalities I have are all attributed to the RPL11 gene.

I was born premature and was very poorly, I had numerous operations and surgeries and have been and out of hospital my entire life having my last major op when I was 16 (I'm 38 btw) I'm still in and out of hospital but only from a management of condition point of view. I was very sick as child and not one person / doctor / consultant I saw stopped to consider that they're may be something collectively wrong with me, everything I had going on was treated as an individual ailment, no one connected the dots. My poor poor mum argued all the way but no one took her seriously, not one person listened to her, my mum is a trained nurse as well and she was totally dismissed.

DBA is usually diagnosed within the first 12 months of a child's life, mine wasn't diagnosed until I was 37. It took me getting pregnant and getting sick before I was taken seriously and even then I had to fight to be listened too, but that's another story.

The relief I felt when they told me was over whelming, I've struggled with so much stuff over the years (fatigue, pain, illness, depression) and have never been able to work out why I was the way I was physically and emotionally so when they told me I had DBA everything clicked into place and I suddenly understood who I was and why. But then I felt lost and confused because everything I thought I already knew and understood about me was a complete fabrication. It was all bullshit and then anger kicked in.

My son doesn't have DBA, the poor lamb had to endure all the tests that I had but thankfully he doesn't have it, however it doesn't take away the fact that I have it and I worry about what the future holds, I like to think that I'm as tough as old boots but the thought of him seeing me ill makes me crumble.

To all intents and purposes when I'm in remission I live a relatively normal life, but there are times when I just want to curl up in a ball and die because I feel that exhausted and weak and angry and confused and frustrated because I can't function properly. Having DBA makes me feel so incredibly isolated that I can't begin to articulate fully how I feel.

Blimey, this is the longest post I've ever done and the first time I've actually said all of this to anyone in one go. Apologies for offloading!

[ArbitraryUsername]

Don't apologise for offloading. That's what the thread is for. It sounds like it's been a really hard journey to diagnosis for you.

And it very clearly has affected you profoundly; just because some people have it worse doesn't mean that you're fine. I struggle with that sort of thing too though. It's easy to say to others but hard to apply to yourself. And it works in the reverse too; I find fault in myself for not coping when I see others coping with the same condition (and other life factors). It does no good to make comparisons like that.

[neriberi]

It has had a profound affect on me, it's changed every part of my being and my life, it's altered relationships with those closest to me to the extent that I've lost friendships.

I do realise that everything is relative, my struggles might seem woeful to me but maybe not to someone else, but it doesn't alter how crap I feel at not being able to do "normal" things.

I don't want DBA to define me, but I know that it does.

I take my hat off to everyone of you btw

[belleshell]

Neruberi, we are here to off load. i was diagnosed with CFS in 2009, untikl then i had struggled for 10 years with strange pains, bouts of fatigue, etc...... in 2002 my mum had a brain heamorrage and we nearly lost here, but we didnt thankfully, after 6 months struggling to get her sorted,( she became dependant, whereas she had always been very independant and i lived 100 miles away with a 6 month old babay and a 3 year old DS.) i collapsed in work, loosing all sensation down my right side. i had numeorus investigations etc, all of which came back negative... so i was left with even worse fatigue and pain etc. one Dr told me it was all in my head...for which i said fine sort my head out.it was unbearable....

After a few years i paid to see a consultant privatley and again was screene dfor MS...all of which was negative, because i kept loosing all feeling down right side i was diagnoised with migraine!!!!

i put up with it for a few years and eventually begged a GP to help because i wasnt coping..he reffered me to ME clinic. i waited 6 months for appointment and luckly or unluckly i was ill at time of appointment and was diagnoised with ME.....

Like you it all fell into place but my life changed.. i didnt know who i was... i also lost friendships and my marriage....

I still arent sure who i am and thats what i find hard. I am happy in my life i have a partner who cares....

Ooh sorry i have ranted a bit there but i wanted to say your not alone, and we are here to support each other... we all have good and bad times..x

[ArbitraryUsername]

I can absolutely identify with the problem of feeling that your condition is coming to define you. It's awful.

Even worse is that any health care professional (or manager at work) who sees that this upsets you immediately assumes that you are (just) depressed. But being upset is a perfectly natural and reasonable reaction when you're confronted with the inability to do stuff everyone else takes for granted. There has to be some process of grieving for what you thought your life would be. And with conditions like ours, often you can totally have come to terms with something and then another symptom or issue appears and you have to start all over again. It's hard in so many different ways.

[fuzzpig]

I totally agree. I do think it is a berievement type grief, you are mourning the loss of not another person but yourself - or rather, the person you used to be, and the person you imagined you would become.

[CouthySaysEatChoccyEggs]

God I'm still really struggling after Wednesday, taking the DC's out. Did absolutely nothing all day yesterday, and now I'm struggling not to fall asleep while DS3 is still VERY wide awake. And I mean REALLY struggling, that tiredness where your eyes keep dropping.

But I'm on my own with DC's, DS2 & DS1 are in bed, DD is watching new twilight film on DVD.

But DS3 might be awake for hours yet.

[CouthySaysEatChoccyEggs]

What arbitrary said...THAT. Every time I grieve for the loss of who I was, and come to terms with it, something new and even more shitty drops on my lap and I can manage even less.

I'm sick of walking through all the shit now, can anyone tell me where the next pile is and what it will be?

[Iamaslummymummy]

I completely understand the feeling of grief.I feel like I've lost me. I've lost who I was for 35 years. I am trying to develop a new sense of me though based on what I can do.

I take 2700mg of gabapentin per day, naproxen, nortriptilyn, fluoxetine, cocodomol.

I've got horrible new pains in the front of my ankles like on the top if the feet. It doesn't matter how much I rest or am active for, they hurt just the same. Am going to the podiatrist on Monday so hopefully they will be able to shed some light on it.

[gallifrey]

yes I can totally understand too, I feel a shadow of my former self, the person that was active and horsey and single handedly ran a yard of top competition horses for an Olympic rider. when I look back now I'm amazed that I did all that and now I can't even walk from the kitchen to the living room without feeling exhausted
I feel like a terrible mum to my poor children who rarely get taken out anywhere.
Also I never get invited out with any of my friends...

[Badvoc]

Yes.
I get that.
Am going to take the dc out this afternoon with dh.
I will be unable to do anything tomorrow.
That's the difference.
The having to plan any activity to ensure that I have adequate rest time afterwards.
It sucks.

[belleshell]

I had a rare night out last night, not the partying around town night out, my friends no better than that, so me and my 4 good friends went to another friends house for a few drinks and dips.i cant remember drinking too much, but actually i fell aslepp at the table at about 10 pm...(thank god my close friends kinda get me!!) eventually after moving from table to floor we left at 2am... today my legs wont work properly... im sure a hangover doesnt affect your legs... i was always the last to bed...now im the 1st.

[Badvoc]

That's a running joke with my family :(
I need lots if time to recover from a night out.
Got a wedding in July and my mum is already making jokes about me needing a week in bed afterwards.
Whenever I go out I try to make sure I have a good time, because I have to pay such a high price :(

[ArbitraryUsername]

Glad you had a nice time and that your friends are understanding belle.

H has a cold. So he's making lots of noise about how terrible he feels (seriously, he's wandering around going 'ahhh, ohhhh, uhhhhh' as he packs to go away abroad for a week). I has to work really hard to stop myself falling asleep waiting with DS2 for him in the hairdressers earlier but didn't say anything at all about it. Nor did I mention my aching muscles/joints as we walked around town. If I adopted his policy for communicating how crap I feel, I'd need to pay for prime time TV advertising space on a daily basis!

That said, he has been being nicer to me. I suspect he might feel a bit guilty about being an arse at counselling last week. He's been completely reasonable about me wanting to go to bed early, which is very unusual. And he's been coming down to spend time watching crap on TV with me early in the evening and playing videogames once I go to bed, rather than playing videogames til 9/9.30/10 (while i wait up for him) then coming down and expecting me to watch TV with him/getting annoyed that I need to go to bed.

[CouthySaysEatChoccyEggs]

I'm STILL washed out from taking the DC's to the science museum on Wednesday, falling asleep at the drop of a hat through the day etc.

Thankfully Ex has this week off, and has taken DS2 & DS3 to his house to give me a rest till Tuesday.

God, I used to be able to go clubbing till 5am and get up at 7am only 10 years ago with no ill effects.

Now one day trip out with my DC's, and 4 days later I'm still bone shatteringly exhausted, in pain and almost unable to move.

I'm watching the house disintegrate into a hovel around my ears too because I can't get up and do anything.

[Badvoc]

Ugh.
Bad headache behind my right eye last night. Nausea.
Great.
Still there this morning although not quite so bad.
My punishment for an afternoon out yesterday :(