Feeling very down today :( Flare up is unmanageable. Brain fog, dizziness and pain.

[Nat1291]

Hi everyone

I hope you don't mind this post, I just needed to come and speak to people who will understand.

I've been having a flare up for the past month and half. Today it has reached a point that I just can't cope. The pain in my bones and muscles is horrendous, but the worst part is the fact that I'm finding it so hard to move. My body feels like a plank of wood and I can't sit or lie down comfortablty. Most of the pain is concentrated in my lower back, left buttock ,pelvis and left leg. This is what I have everyday but it's like someone turned a dial up to full blast last night and I only managed to get out of bed an hour ago.

I'm on 150mg Pregabalin daily but it's not touching this pain. I can't sleep, can't sit and I'm having brain fog today. I feel dizzy, as if i were drunk and totally spaced out. As I write this i am laid half on the sofa and half off it on my side because this is the only way i can sit without putting pressure on the painful areas.

I tore the anterior talofibular ligament in my foot 7 weeks ago and it is still painful, this combined with the constant foot pain i have means I can't stand for very long either.

I'm waiting on my Rheumatologist appointment after my Ana came back positive.

It has been a horrendous week in my personal life too- I think the stress of it all has triggered this.

I am so fed up. I don't even have the energy to cry. I just need this pain to go away. I can't believe this is what my life has become. Missing work, crippled with pain and unable to think straight because my brain won't cooperate.

Do you think my gp would give me something or do I have to fight through it until my referral?

It sounds so melodramatic but I don't have the energy to refuse to let this get the better of me today. For the first time I give in and I feel empty.

I could go on but I can't find the words right now and it's taking so much effort to type this up.

Thank you for reading my ranting. I feel less alone knowing this post is up and someone will read it.

I hope you're all having a good day and enjoying the sunshine x

[Lupiknits]

The right place to rant and get understanding! If I were you, I'd see the GP about pain relief. Yours sounds too bad to soldier on waiting for a rheumy appt, and brain fog isn't exactly helped when you are in such pain x

[Wenwen]

So sorry for your flare and current condition. Hope you will see your rheumy soon and have the proper treatment and have the flare under control.

Are you taking protection from the Sun. I was carried away with the spring like weather and worked in the garden, next thing I noticed was the rashes getting worse.

Hope you are feeling better.

[misty14]

Hi nat

So sorry you are having such a dreadful time at the moment. I agree with lupie knits that your GP can help with pain relief as you need something stronger. He can also chase up your Rheumy appt for you by writing to them asking for you to be seen sooner. I do hope you feel better soon. X

[Cas70]

Oh goodness, you poor thing - please get to your GP as soon as you can. You need some help. I am having a bad flare and proper pain killers and Olbas Oil on the joints is helping - please please get help x x

[Nat1291]

Thanks everyone for your replies.

Unfortunately I can't see my gp- there is no point in even pushing for it. The receptionist will not give an emergency appointment for pain as isn't considered considered to fall into the criteria. I had this argument two weeks ago where I lost it and asked how she would feel if she could hardly get out of her bed.

Appointments with the gp can only be made for 2 weeks time. It's a bloody joke. The most I'll be offered is a gp call back in 5 days time and they'll refuse to prescribe anything stronger than Pregabalin. Especially now I'm waiting on my Rheumatologist appointment. That's if you can even get through to them. I've called 15 times in a day and not been able to get through before now.

It's quite disheartening. The pain is still awful but the brain fog isn't so bad today.

I suppose I could go up to the surgery with my partner and demand to be seen but it's two bus rides away and im just so exhausted. The thought of battling it out at the desk is just too much but come Monday I'm back to work (if I haven't been sacked for being off for 4 days) and I know how hard I'm going to find it sitting in a chair for 9 hours.

I don't know what would help take this burning, twisting pain away. My hands are cold and achey today too which is a new thing. I have absolutely no strength in my arms but i managed to make dinner last night so that's something.

I'm going to force myself out of bed and try to hoover now- I can't stand another day laid here concentrating on the bloody pain.

Have any of you found hypnosis audios of use?

I listen to them for sleep but I came across some for pain and wonder if it may help.

Hope you all have a lovely weekend x

[Silvergilt in reply to Nat1291]

Rather than wait for your rheumy appointment I would strongly suggest you call them ASAP - yes I know it's hard to get through but keep trying. Is there a rheumatology advice line for your hospital? Try that. If that doesn't work, search up the website and call the consultant direct, or even email them (I have been a huge pain before, and I'd do it again if needed). Tell them you are in pain and you are getting no help or treatment from your GP. I have presented at hospital and was in such a bad state the nurse pulled a consultant out of the hallway to look at my hands and they gave me an emergency course of IV steroids right that day. When there is need, they help, and they help quickly. I get more scrips from my rheumy - who knows what is actually in the range of 'ok' and 'not ok' - than my GP, who hasn't worked in rheumatology in decades.

Is that the only GP in your area? Could you do a switch - or, better yet, complain directly to the surgery because it is not the receptionist's job to decide who is 'worthy' of being seen. Yes I know it sucks and seems like too much effort, but you need a GP who is more available, and less dismissive; pain is going to be a constant in your life and you need someone who is more willing to address it. So you HAVE to have someone willing to work with you.

I had to ride out without any anti-inflammatory meds as I was in re-prescription limbo last August-September. I had NOTHING, and it was rather grim. I ended up seeing a different GP in-house (who isn't anything as dismissive as her husband who is at the same practice) and managed to get some pain medication to help me ride it out. The name of the game for that month and a half was DISTRACTION - binge netflix watching, my Dutchman built me a blanket fort, I ate a lot of ready meals to save myself needing to cook, cranked my heat up, had a lot of baths and showers, wore braces on joints that ached, listened to audio books, listened to music, meditated to chants...a lot, and I mean a LOT, of self-care, in whatever form that took. Do that thing. Give yourself whatever you need or want or crave, and ride it out.

I wish you courage...it's a long slog but this is NOT going to be your forever.