maybe looking for sympathy? just upset!

[GreenGoth89]

I've had chronic pain syndrome for 5 yrs now (not that I believe that's really a definitive diagnosis but that's what they've called it) hypermobility syndrome (but we're waiting for genetic testing to find out if its ehrlers danlos syndrome). I've been having recurrent muscle spasms - serratus inferior, psoas (all the way down to my hips from my back) and now my neck (mainly splenius capitus but others too). I've been really wobbly for about 2 weeks, got given diazepam for my psoas again and then it got worse so I couldn't sleep and I couldn't get out of bed - dr came out upped the dosage and then gave me
Codeine. A couple of days later it eased up a little and I was able at least to make it to the loo on my own again and up and down the stairs (partly carried by DP). I got up to meet DP on landing and my leg gave way (regular occurrence) so I went splat with head and neck into chest of drawers. Sat up and cried but apparently I collapsed and then was take to hospital with concussion.on a spinal board and all that stuff. So i was sent home with them worried about the recurrent spasms ( as my neck went into spasm whilst there) but just referred me to the GP and told me to rest. But now I can't wash and dress myself (I struggled on bad days before but not like this) can't wash myself, can't get upstairs even with help, can't stand for more than 10/20 secs, I see double on and off and basically able to do naff all! I've had a social services assessment for 6 hrs a week and an occupational therapist who's not given me much than grab rails but there's so many trip hazards neither the council not the housing association will fix - like carpets coming up, bent door bars, no handles on some of the doors. So I am stuck on the old uncomfortable futon downstairs with a 4 y/o going bloody mental, my DP and my DM doing what they can but getting exhausted, I'm doped up to my eyeballs and scared these recurrent spasms are something more. I've got limited mobility in both my back and my neck, I'm using two sticks, and someone else to get around and I'm generally fucked off. I can't deal with friends around and they've all got their own shit going down right now. I have no idea if or when I'll ever make it up the stairs again. WTAF do I do?

I'm sorry I have absolutely nothing useful to suggest, but I have a lot of sympathy

There used to be a back pain support thread on here, I don't know if it's still running, but someone on there might be able to help.

I hope you can get some answers about the neck spasm and some relief soon.

So sorry you're having such a rotten time. Here's the long-running 'Back Stories' thread. You might be able to bump it, or search it for useful info.

Its my unsteadyness which I';m most worried about - my DM and DP think its all a side effect of the meds and I'm really not sure.

Had major upset with DP and DM last night/today which hasn't helped. DP is staying with friends until DM goes on Monday. Fuck this feels like both a physical and emotional rollercoaster.

Come off the codeine only because the constipation was causing almost as much pain (10 days +) as my back and neck. Getting lots of headaches now. Mostly due to neck spasms I guess but I am worried I've got a herniated disk - the weakness is my biggest concern!

I'm sorry to hear you're having such difficulty. It sounds really hard.

I don't know your local authority but if you haven't already, try referring yourself to Reablement Care. It should be free and time limited, but quite intensive and including sorting out your home environment to make it safe. Don't tell them anything about any home support you have and don't have your partner or family at any meetings. (Don't lie!) The Falls Prevention services in your area will be targeted at over 55s, but you can call them and sometimes they'll help disabled people too.

Accessibility in the home (getting up your stairs etc) is divided into two areas: 1 Equipment and 2 Adaptation. Equipment is normally issued or prescribed by Occupational Therapists (OTs) either from the hospital or from the joint council and NHS run agency your local authority provides. 2. Adaptations are a bit different (basically if it's screwed in, it's an adaptations and if it's free standing it's equipment) There is a government fund for adapting properties that each council runs, called the Disabled Facilities Grant (DFG), and you are entitled to apply to them for adaptations. It's up to £30,000 and it's means-tested.

Ultimately if you can't manage stairs you will have to move house. It's hard, but it is possible. Good luck.

I have 6 hrs a week and I've been through reablement before and it's like handing over all control of your life down to what you wear, when you get up, what you eat, when you sleep, washed and dressed by different people everyday, it's horrendous and made my PTSD so bad the CMHT had to get involved.

I've been assessed by an OT and he said for now just grab rails and only if I'm not better in 6 months will they consider a stair lift.

I'll find out about a falls prevention service but nothing else has been offered.

DP thinks he can do it all and me and my DM aren't so sure.

Got sent for an X ray when it should have been an MRI so got an urgent referral back to my GP for one, so hopefully will get one within the next month or two. Still in lots of pain and been unable to get up the stairs so sleeping on the futon. getting very frustrated.

Walking aid clinic decided I couldn't do crutches as my legs are giving way and doctor has said no more diazepam which was helping the spasms. So I have less pain relief and I'm now even more stuck getting around the house with the walker. Not happy, feel like I could like this for months.