Going round in circles

[Butwhydoesithurt]

I have another appointment at my GP today (having seen them at least once a week for the past 2 months) to try and sort my pain levels out.

I suffer with chronic back, hip and joint pain - no official diagnosis as of yet but GP is worried about the instability of my hip joint. It clunks out of place causing unbearable pain - I’ve had 2 falls in 6 weeks because of it.

I had a referral for the MSK clinic (appointment at the beginning of January) which I had to wait 6 months for and my GP has finally referred me to the pain clinic too (appointment not until the end of May.)

Between then and now they are reluctant to give me the painkillers that I’ve been on intermittently for the past 3 years.

Shortec - 5mg to take up to 4 times a day.

I take co-codamol (30/500) x2 4 times a day and naproxen (250mg) 3 times a day.

My issue is the pain in between the co-codamol and naproxen doses - within about 2 hours I am in agony awaiting my next dose.

The temptation to take another 2 co-codamol is ridiculous - even though I don’t do this.

I use TENS, deep heat, have hot baths when I can, use heat and ice packs, take vitamins C, D and B12 in maximum doses - nothing helps with the breakthrough pains.

I’m a 22 year old, single mum (3yo little girl) so being in this amount of pain isn’t an option - especially having to suffer until MAY when I finally get to see a pain clinic consultant.

The last time I went in to the see a doctor (it was a locum) she was a rude cow. Gave me 3 days worth of the shortec and said basically you’ll just have to deal with it - not good enough when you’re bringing up a child, running your own home, trying to work and study too.

So, I’ve got an appointment with my lovely GP this morning - I’ll be complaining to him about that cow of a locum and asking exactly what he suggests I do.

If I could live in a hot bath I would - but I can’t because of life.

If I could spend hours connected to my TENS I would - but I can’t.

So, short of being bed-ridden (which isn’t an option) what else do I do when these breakthrough pains knock me off my feet - leaving me in tears.

Even if it’s only a temporary solution to get me through the Christmas period - I’ve just lost my mum so Christmas is beyond hard for me this year as it is, grief with excruciating pain is just making me want to go to bed and stay there.

Not fair on my poor little girl, not fair on me.

Sorry for the rant. I’ve had yet another sleepless night from the pain (4th in a row) and to be completely honest, I’m quite pissed off with it all now.

[Butwhydoesithurt]

Meant to add; I do fit in hydrotherapy, osteo, physio and yoga (all paid for privately) when I can.

I use breathing techniques, visualisation, hypnosis videos, mental analgesia.

I try and do some gentle exercise every day (mainly stretching and walking) and when I do it, find it helps; but I can’t do the exercise when I’m in pain which in turn causes more pain. Sick of the vicious cycle I’ve been thrown in to.

I try pacing myself - but with work, child, house and everything else it’s physically impossible.

[Bananas5 in reply to Butwhydoesithurt]

I think you have answered yourself in that last sentence. Pacing. Hard as it is. You push yourself and you will suffer.

There is no magic cure at pain clinic. They will look at everything you already do, what meds you take and your lifestyle.

There are meds for breakthrough pain but I won't suggest any as I am not certain what is available these days.

Yes you are young with responsibilities but Christmas doesn't need to be so hard physically. Stand back a bit. Take quiet moments to remember your Mum and think about yourself not anyone else.

Children are very adaptable and resilient.. Have you talked to your daughter about your pain and how it hurts to do things with her?

Finally my advice when you see your own GP is not to point out flaws in locum but concentrate the time you have with him.

Take care

x

[Butwhydoesithurt in reply to Bananas5]

Thanks for your reply.

I totally agree with regards to pacing but I can’t rest anymore than I do at the moment. I have to work full time, I have to do the chores/cooking.

My little girl is only 3; I hate saying to her ‘mummy can’t play at the minute because she’s feeling a bit sore’ - she understands and is a very empathetic soul, but she already spends so much time at nursery because I have to work. The guilt on top of everything else is crippling.

I’ve cut everything non-essential out; I online shop, I batch cook when I feel well enough, I very rarely go out with friends, I work the minimal amount of hours I can afford.

I don’t want a magical cure, I don’t expect something to make the pain go away completely - I just want a comfortable enough life with the ability to grab a few hours sleep. Not 8/10 pain on a daily basis.

I think the pain clinic for me is more just an assurance that I AM doing everything I can for the pain; not missing anything.

I’m sorry if I come across as short, I’m so grumpy at the moment due to the tiredness and pain - I don’t mean it at all.

Take care

X

[Bananas5 in reply to Butwhydoesithurt]

You can be as grumpy as you feel like...no one is here to judge. Just trying to use our own experiences to help. Maybe think of something you haven't but you are doing almost everything/

Don't feel guilty. Again hard but it is an emotion which takes your energy.

I hear too often how people want their life back...the good old days and for you so young it must be a struggle.

Are you on any disability/chronic sickness benefits? A little extra money might help

you. Does your employer make reasonable adjustments at work to help your pain?

x

[Butwhydoesithurt in reply to Bananas5]

It’s a very kind place this site! I get fed up of hearing myself moan sometimes ha.

Doctor has prescribed me a months worth of Shortec and also started me on something called Gabapentin. I’m a bit nervous about the Gaba though.

It does feel a bit unfair; I was doing so well in life - one accident and one bereavement later, I can barely stand on my own two feet. Very frustrating as an independent person.

No disability benefits, I haven’t had a formal diagnosis yet so I think any attempts will be futile until I have that at least.

My employer does try and help; thankfully it’s a desk job where I can get up and move about as I need to. The hours are something that need to be addressed though - I’m making myself ill doing a 7-5:30 shift Monday - Friday.

I’ve got to speak to HR at some point but my role cannot be part time

X

[Bananas5 in reply to Butwhydoesithurt]

Lots to think about and maybe an appt with CAB about claiming PIP at least. That isn't about what your condition is but how you manage daily tasks. It isn't means tested and makes no difference if you work or not.

Gabapentin is a very good drug but word of caution. I call it the 'marmite' med as it either loves you or hates you. No happy middle road.

Those who can take it find it good. Others know fairly quickly if it isn't for them.

Your GP must start you on low dose and gradually build up dose. Equally if you come off it ...extremely slowly.

Hope it does work for you.

x

[Hidden in reply to Butwhydoesithurt]

Hi, Just a note as Ive been reading your narratives. I was put on Gabapentin for nerve pain about three months ago. I took it for a month. Not only did it not work on pain, but I found that I couldnt remember stuff I should be remembering. That scared me. A few days after I got off of it my memory came back. My P.T. Is now doing triggerpoint injections in my muscles.I have “no pain” now in the side she injected a day later. Going back for more next week. Judy

[morphalot in reply to Butwhydoesithurt]

If you can't manage gabapentin (I had dreadful hallucinations) ask your GP for Pregabelin

[johnsmith]

Looked at the posts. Suggest stop the yoga and physio temporary. See an Alexander Teacher. A physio is unlikely to instruct you into how to do a basic exercise. If you are using muscles incorrectly then the condition you have is likely to be made worse. You need to learn how to bring the body back into balance. An Alexander Teacher should be able to show you a better way of doing the exercise that you are trying to do.

Breathing techniques are useful for handling pain, but not necessarily very good for tackling the cause of the pain.

Gentle exercise is good, but some gentle exercises if done for too long can make certain conditions worse. This because tissue can be irritated and thus behave like a bruise.

Find out about meditation and mindfulness. I am talking about the Buddhist practice not the NHS practice. The advantage of meditation and mindfulness is that you become more aware of yourself and thus learn to spot the problematic movements and thus take corrective action to prevent a worsening of the condition. There is likely to be a Buddhist group near you who can instruct you in meditation and mindfulness.

Pacing is not something I believe in. I do believe in investigating myself so that I can pick up warning signs and stop what I am doing. Or leaving time aside for the recovery time after a particular activity.

Lastly sleep is important. Pain disturbs sleep, so there is a need to catch up during the day. You need sleep for the fine control of muscles. The fine control of muscles makes a big difference on how much pain you experience.

Hope I have been able to be helpful.

[Hidden]

Have you had xrays done to spot any obvious issues? The other option would be to present at A&E when the pain is bad. They could give you a CT scan or MRI to better understand the cause of your pain.

[cyberbarn]

It sounds like you could do with a little help. Not now, but after Christmas see if the GP surgery has a social prescriber or a community connector. They might be able to help you find support for things like filling in the PIP form and other community groups that might be able to help.

I am a single parent, and although my pain levels weren't as bad as yours when my son was that age, they have got a lot worse over the years. Twice in the days before Christmas i had my neck or back go into spasm and couldn't move until it passed. My son thought that I always got ill before Christmas, poor thing. But he is now 22 and we have a great relationship, and we support each other (his pain and fatigue levels are more like yours) so as they say, this too shall pass. It will not necessarily get better, it will be different and we do end up dealing with things better as they get older.

Incidentally, my son and i have hypermobile Ehlers-Danlos syndrome. Have you been evaluated for that? IT can cause a lot of joint pain but x-rays and MRIs won't show anything.

[mle121]

Reading your post it is if I had written it about me. You seem to be trying everything and I know how frustrating it is when nothing works. Pacing is the hardest thing to do and it has taken me years to get the hang of it, but life just doesn't always go to plan so best laid plans can backfire and we pay the price for it in more pain. Could your hip pain be coming from your SIJ (sacroiliac joint)? Have you tried a pelvic support to see if that eases the pain? I do hope you can find some relief to enjoy Christmas.

[morphalot]

Hi sorry to hear about your pain. One thing you could do is alternate the co codanol with the naproxen instead of taking them together. For example take co codanol at 10, 2, 6 and 10pm and take naproxen at 8, 12 and 8pm. Good luck and I hope you manage to enjoy Christmas xx

[BlanketTime1]

I am sorry for your loss... and for your struggles. I know what it's like to be young and then suddenly your body betrays you. I've been 'joking' for a few years now that i'm a young woman trapped in the body of a drunk 90 year old man, lol. I don't have kids, but even seeing my nephew and not being able to play with him for a few hours breaks my heart, so I can't imagine what it's like with you and your girl. my heart goes out to you.

breakthrough pain is maddening. it took me a while to actually take my medication as prescribed because I didn't relish the idea of needing drugs forever. once I did, I got really angry. I take all of my medication, I stretch, I rest, and i'm STILL in pain? sometimes I have to breathe just to get through the moments. hopefully the gabapentin will help you.

like you, I floated about in limbo awaiting diagnosis for quite some time. i'm in the middle of my diagnostic journey, but I know about four conditions now. sometimes it's about changing doctors until you find one who will listen. may is so far away.

there's not really much I can say except sharing is good; you don't need to apologise for expressing yourself here. stay strong.

[annettebernice]

Iv had the same with neck spasms cant sit down haven't slept seen a chiropractor its a long shot but I went to AE they gave me tablets they did ease the pain I asked could I have a prescription he said only if your an impatient your GP will prescribe them he sent a letter to my GP through email went there next morning my GP refused to give me them im lost now its ridiculous how things have changed I never go to the doctors or hospital iv had brain surgery my blood pressure is up they totally refused to help me with this pain.

[Sallyderek in reply to annettebernice]

That's shocking are you in the uk