Week without sleep

[Curlygirl54]

Hi Peeps,

I hope it's only me awake and you are all getting some precious sleep.

I've been having the most awful flare the last 10 days or so and have had virtually no sleep. Most of you will know that I've had multiple spinal ops and a thoroscapular fusion. Waiting for an appointment at Guys & St Thomas's for assessment for SCS

I've not been formally diagnosed but have been told by GP and Osteo that I have all the features of EDs - the hypermobility type. I've had problems with SI joint on right side for years but suddenly it has got so much worse, the whole of my pelvis feels like it's on fire and I can't walk, straighten up, I'm really 'jangly' and shaky with pain and haven't been able to lay in bed for over a week. My nights have been spent in a reclining chair cos I can't even begin to lay on either side or my back.

None of the meds are touching it, I've taken as much of everything as I can, topped up with Oramorph, iced it and now I'm at a loss. It feels pointless seeing my GP as I know I've tried every med over the last 40+ years and I was discharged by local pain management to be referred to Guys. I rang them today and it will be 3 months + before I even get initial assessment.

Any ideas at all anyone please??

I'm trying very very hard to stay on the right side of despair but really struggling.

Thanks so much for being here - it means so much.

Shirley

Xx

[ZedT]

Hi Shirley!. Gosh you really are in acute phase You say you've iced, have you tried ice then heat then ice? Do you have someone to help you maybe get in the shower? Are your muscles in spasm? If so have you taken Diazepam? You probably have tried these, I'm just trying to think what I do in acute phase. I think its probably time for a trip to the nearest walk in centre, you cant stay like that for three blumming months! The only other thing I can think of is see someone privately. They might have a payment options plan, and access to some newer meds. So sorry I can't help, but i know exactly the pain and overwhelming frustration and I'm right here with a hug. Lack of sleep makes everything so much worse. Someone on here once suggested cannabis to me. I didn't try it, but i know it has been prescribed in some areas and has brought relief, have you considered it? I do hop you find something and fast. Xxx

[Bananas5]

Ditto in spades to everything Zedt has said Shirley.

I would imagine all the muscles are screaming around the 'injuries' trying to protect these bits. Acupuncture? This woulduntighten those knots and give some relief. You have probably tried it but it works for David and helps stop flair ups. A bit.

Waitinglists are often longer than Guys but not expensive privately.

Go back to your GP and show him what you have said here. Worth putting the ball back at him.

And yes - cannabis does work especially when taken in cake.

Virtual hug

Pat x

[ZedT in reply to Bananas5]

Oh yes, do have some acupuncture, as for me that helped relax the spasm. Don't think it would have helped my last setback though, too far gone and had to be hospitalised. Yet i think it's worth a try. Helps sleep too. Xx

[Curlygirl54]

Thank you so much ZedT and Paton

I really appreciate your replies.

Yes I do use heat as well but mainly ice at the moment as Osteo ( I've been seeing her 13 years and she is highly medically knowledgable - has predicted accurately the results of every MRI or other scan) said tissues all around my pelvis are 'boggy' with inflammation and need the cooling deflammatory effects of ice.

I do take diazepam tho.

This is probably reading as very negative - I'm asking for your input and then answering 'yes but'

The pain management doc I had until recently was very clued up with current treatments and meds - he started me on Palexia (Tapentadol) last autumn.

I am doing all I know to try and settle this flare but you're quite right, I need to decide whether it's a GP trip or a short term pain consultant to help me through the next few months.

It's a tough life we lead eh?!

Thanks so much for being here, I hope your day is as comfortable and fulfilling as possible.

Thanks again

Shirley

X

[Bananas5]

More often than not we answer our own questions. Just putting it down on paper, listening back or telling someone else.

You didn't mention acupuncture though? Would that be painful with inflamation?

Yes good day aprt from rain and new greenhouse has converted itself to indoor swimming pool. Insurance claim but put up by builders who had a few too many parts left over!

Pat x

[janh]

Hi Shirley

I too have had terrible on going muscle pains and flares. I have had them since I was a child. I am now 63 and am in more control of them than I was. The most useful thing is to follow the Mindfulness technique. It's absolutely brilliant in that it really does help in all aspects. I still obviously get days that the pain overtakes me but I tell myself that I will get over the really bad days and the better days are around the corner again. Before, I would spend days crying and be in the pit of despair. My poor husband wouldn't know what to do with me.

I went on the P M course at the local hospital and thought it wouldn't help but it gave me a taster of the Mindfulness way. They also did little exercises which I kept telling them made my pain worse but they wouldn't listen, they were very frustrated with me that I didn't agree with all they were saying. I found you take the best bits of the course and leave the bits that either don't work or make things worse. Exercise, even yoga, is very bad for me. It makes all the pain much worse and sends my muscles into spasms.

I find slowly walking short distances and even gentle housework a much better way of living the best life I can. I have taken up decoupage and other crafts and they really do distract you. I have many things wrong with me including a shattered spine after being hit by a faulty sliding door at Guys. The drs have realised that I have over 30 different complex illnesses (how for God's sake is that even possible).

No Dr or physio can really understand us, as we are so complex. We really have to sort ourselves out as we will wait forever for a miracle cure or even meds to keep us on an even keel. I still need prednisolone (hence the osteoporosis) and morphine for my spine injury. I use lidocaine patches if I have a really painful muscle spasm (usually after moving or twisting in the wrong way) and that I know will take a couple of weeks to settle down. I use paracetamol every now and then and still feel a lot of pain but I use the mindfulness to think about it differently. I still get my moments of hopelessness but they are nothing compared to what they were. One of the best sites for free download of yoga nidra is a Ramayana with Shar Hills-Bonczyk. It was on messykids.com. if you have a problem let me know and I'll try and find it for you. Let me know how you get on. Good luck.

Jan h

[Curlygirl54]

Thank you very much indeed Jan h,

Mindfulness is already in my armoury - definitely a powerful tool.

I like Vidalyma Burch's book but find her programme fits me less than Jon Kabbat Zinn - I think it's important to find a voice that fits.

hopong you are having a comfortable day 😊

[DianeT]

Hi curlygirl

How are you feelings i day, a little better I hope? I know this might sound silly but have to tried a TENS machine? Sometimes the simplest things often work the best every now and again, even if you only get a couple of hours respite so you can snooze? You never know might work?

Take care

Diane

Xx

[Curlygirl54]

Hi Diane T,

Thanks very much for your thoughts - I do appreciate folks being alongside when times are so tough. At the moment the 'jangly ness' ( can't think of another way to describe it) of the pain had me hitting the ceiling when I tried the tens - I think my nervous system is on red alert as the pain is so acute just now that the tens just worsened that.

Maybe once it starts to settle I may be able to tolerate the tensbetter.

My Osteo advised an SI joint belt - the idea is to wear it tight enough to literally hold the pelvis together so the SI joints can't splay out all over the place. My pelvis is perfectly placed to give birth but as I'm 60 and definitely not pregnant it's not an ideal state for it to be in!!

Unfortunately, the knock on effect is that the whole of my spine is unstable without support lower down 😁

Hope you're having a comfortable day

Thanks again,

Shirley

X

[angelrobert]

I think this sleeplessness and pain are the result of frustration, so first you should have to control all of your frustration to resolve other problems.

[Curlygirl54]

Hi angelrobert,

Thank you taking the time to reply and offer your view - much appreciated

Maybe a little about me which is wider than the medical stuff on my profile COS We're more than our conditions - aren't we folks??!!

I'm a counsellor and I'm well and truly 'theraped' and really do feel that I've reached a place of acceptance of this is what I live with and it won't kill me ( unless I let it ) I've worked through ( and still continue to) the grieving process of all we lose in our lives as a result of the diagnosis the pain and the limitations.

There's a wonderful quote by a really well known theorist in the counselling world who says ' What we resist, persists (Carl Jung)

I know that when I was fighting my condition, I was never going to win but more to the point the energy to fight was draining all the little resources I had. Additionally, the fight, of course, left me doing things that my body just cannot and should not be doing.

Nowadays that acceptance leaves me with more resources to do the things that I know support me and are feeling meaningful. So, I'm able to do far less counselling work that I was or would like to. But I'm still retaining that part of me which is 'Shirley' and by pacing and doing much less I can still do some and rejoice in just how much I love my work and the depth of meaning it gives my life.

Mindfulness is a big part of my armoury to manage both the pain and the acceptance of where I'm at.

So, if it isn't frustration that keeps me awake - and it isn't, then that leaves me with what I know. Pain, especially when acute as it has been through this flare is what steals my sleep. Being in this process for 42 years, I am, unfortunately tolerant to many pain relieving medications but I still take a range of the usual culprits, with the jolly old side effects they come with - much the same as most of us on here.

So thank you again for taking the time to reply. Your comment did prompt me to check out further with myself whether what you suggested may be so and I'm confident that it's not frustration - just straightforward off the scale pain.

I hope you're doing ok?

Thanks again for your input.

Best wishes

Shirley

Shirley