Very bad flare up. Need relief. Please advise? Going mad with pain.

[Nat1291]

Hi everyone,

I'll post a more detailed update on my progress so far later on- I'm pleased there has been some.

Basically I've been given a preliminary diagnosis of Undifferentiated Connective Tissue Disease but I have clinical and physical features of Lupus and Sjorgens. Ive to get an OFFICIAL diagnosis of either Mixed Connective Tissue Disease or Primary Lupus w. Secondary Sjorgens in Jan. I also have Psoriatic Arthritis and Hypothyroidism with mixed disease and Tachycardia.

I've been sent home with Tramadol and Oramorph. I've been coping ok but the past week + I've gone downhill. The meds aren't cutting it. I'm in agony and feel like I am going to snap and have a breakdown. I wouldn't say the meds are wonderful anyway but on normal pain days I just about cope. I'm not coping right now.

I can't get to see my gp and I'm not allowed to see any other ones because im "too complex".

Christmas is around the corner and I can hardly get out of bed. Im forgetting my words, mixing them up, vomiting randomly, feeling dizzy etc on top of trying to block the burning, grinding bone breaking sensation that's my pain right now.

I haven't slept all night and this is yet another day of widespread torturous pain.

What can I do? I'm at the end of my tether. Thank you x

[misty14]

Hi nat

So sorry your having such a bad time !. Do hope you get a diagnosis in mid Jan. MCTD has a particular antibody that has to be present so it sounds like your body is changing to a more specific illness as the other possibility is primary lupus. This can happen with UCTD and its goid you've been kept a close eye on!.

I'm wondering what lupus treatment have you been taking as this could be adjusted to take account of your flare?. Might help pain better than the strong painkillers you've been given!.

How is your heart rate at the moment?. I'm interested that you 've got tachycardia as I've got a spell of it too and had symptoms of dizziness, pain etc. Been put on a beta blocker and it's so improved my symptoms. Are you on anything for yours?.

Lastly, it's not right for you to be told you can't see any other GP because your too complex!. Illnesses don't just happen when your own dr is around. Christmas and any other holiday time is tough for this and you need help now as you rightly say!. You've got to feel you can seek help when you need it regardless!. You can ring 111 and get help from your areas out of hours GP service. You need that advice at the moment if you don't improve.

Do hope your better soon. X

[PMRpro]

I think you call the practice and tell them how ill you are, what you have told us, and that - since you are vomiting and not able to sleep - being left over the LONGGGGG weekend is not reasonable. Please can you have an emergency house visit. Then it is in their court - they would be negligent to leave you.

[Lupiknits in reply to PMRpro]

I can only agree with the others. Nobody in such pain should be put off as "complex" or "it's Christmas" . Pain doesn't take time off. Call 111 or really put the pressure on the GPs. If you have someone to call for you it can, but shouldn't, make a difference. You sound in such distress x

[whisperit]

Yep, get a GP to visit. If they consider you "too complex" to treat, then they should be admitting you to hospital. It's Friday, so if you get in now, you might get to be seen by a specialist (rather than a house officer over the weekend) x

[Hidden]

Hello Nat. Sorry to hear about your very bad patch. I have been on Tramadol and morphine for a number of years. Unfortunately the morphine, particularly Oramorph, can really make you nauseous. You really should have been prescribed an anti-histamine like Cyclizine to help with the sickness. I have to take 3 cyclizine a day to stop me chucking up all over the place. If you weren't prescribed an anti nausea drug you really need to get back on to your surgery and explain about the nausea. It's very tight on Christmas now but if they are efficient they should be able to get you a prescription. Hope things improve. Stephen.

[Chanpreet_Walia LUPUS UK]

Hi Nat1291,

We published a blog article on pain management which contains helpful tips and information that I hope you find useful: lupusuk.org.uk/pain-managem...

Mixed connective tissue disease (MCTD) is an autoimmune disease that is considered to be a cousin of lupus. We published a factsheet on ‘LUPUS: and Mixed Connective Tissue Disease’ which discusses symptoms, complications and the treatments available for MCTD. To read this factsheet, please click here: lupusuk.org.uk/wp-content/u...

We published a blog article which has information for those newly diagnosed with lupus: lupusuk.org.uk/getting-diag...

Confusion, difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...