Feeling left high and dry to suffer alone...

[sparkle247]

So sorry, I only seem to post when I am feeling down!

Am having the worst flare I have ever experienced, 5 days so far and no sign of a reprieve. My lower back pain is immense, as is my neck pain and tingling hands and feet. Bad arthritis is causing havoc in my hands and elbows, and Raynauds is bad in my fingers too.

I had been very lucky so far as my meds [ hydroxy and meloxicam] seemed to be working well. I have had previous corticosteroid injections, either in my arm or in my joints but have been ok without those since Feb.

So yesterday morning, after four days of feeling as if I have been in second stage labour, I called my rheumy to try to get an urgent appt for a steroid injection and/or stronger pain killers. I was told someone would ring me back with an appt urgently. Lunchtime today I still hadn't heard anything, so rang again to be told he had got the message but hadn't had time to answer. A couple of hours later his secretary rang to say he could see me a week on Thursday!! Now , I'm sorry but that's about as much use a chocolate walking stick! So I asked if my GP could give me anything and she suggested that would be a good idea to ring them, which I did and I even explained to them how much pain I was in and how getting there would be difficult and I only wanted to come down if they could do something. They convinced me to go in, but guess what... they could give me nothing more than double my dose of NSAIDS and co-codamol!! They could have told me that over the phone!!!

So now I am exhausted, twice as stressed and feeling left high and dry by those that I thought were there to help.

What an absolute sham And quite frankly after five days of excruciating pain and no sleep, and no medical person able to offer any help, I can see why some people feel they have little option but to leap off Beachy Head.

Here's hoping that everyone's pain has eased a little soon, and tomorrow will be a brighter day.

[joannebond360]

Hi sparkle.

Just wanted to say that you are not alone. Been flaring too since Thursday, its the absolute pitts! You must be so disappointed with your rhemuey! So bad that you had to go in feeling so awful for them to tell you that! No one understands how bad it feels to be flaring. I really hope it eases for you soon. have had to up my pred so im hoping that will work. Big get well hugs to you

[sparkle247]

Thank you hun. I wouldn't wish a flare upon anyone but it is reassuring not to be alone. My previous flares have lasted on average 2 - 3 days, and although intense I can usually manage them with the help of a Tens Machine. But five days of what feels similar to second stage labour pain has just been too much for me to bear

Yes, sadly I am very disappointed with my rheumy. Someone I had, until now, trusted implicitly with my care, but I am finding all respect slipping away.

Having worked as a Head veterinary nurse for 25yrs I am finding it so hard to comprehend that a human can be left suffering in this way, it would have caused an outrage and most certainly a tribunal if any vet left an animal suffering in such pain for more than 24hrs, let alone over a week.

I'm just grateful I have such amazing friends and family to help me through.

I hope you feel a little better soon xxxx

[zebedee01]

How awful for you

I'm sorry I can't really offer any advice as this is all kind of new to me, but I really hope you feel better soon xxxxx

[sparkle247]

Thank you zebedee01 It's all fairly new to me too, but I am learning quickly!

Take care xxx

[joannebond360 in reply to sparkle247]

It's all new to me too. Know what you mean about suffering alone, very lonely place and very scary!

Hope each day it gets easier for you and the flare lifts.

If you don't feel better definitely keep on to your rheumy. Thinking of you.

[sparkle247]

Thank you again joannebond360. Bless you. Hope you are bit better this morning? I didn't sleep at all again, but think, as I'm very over tired, emotional and in excruciating pain, the last person I want to speak to right now is my rheumy Otherwise I might just say something I shouldn't!

Will ride through this awful,harrowing episode and come out the other end a much stronger person.

Thinking of you too x

[Voutton]

I am so sorry to here about your lack of response from both your doc and rheumy . Can I ask how long you have been diagnosed and do you live in England or Scotland ? What were your symptoms that put you in bed for five days ? I have had SlE for all my life tho only diagnosed 22 odd yrs If I can help in any way Take care x

[sparkle247]

Hi Voutton

Thank you for your concern, I have had a much better day today, as the Doctor did double my dose of NSAIDS and

co-codamol and actually I do feel more human at last! My lower back pain was immense which, along with bilateral hip pain, I can only describe as similar to childbirth lasting five very long days and five very long nights. My neck pain was making it difficult to hold my head upright and I had tingling of hands and feet. Bad arthritis is still causing havoc in my hands and elbows, and I think the changeable weather is exasperating the Raynauds in my fingers too. I am normally able to control my one or two day flares with a Tens machine but this one was not like anything i had experienced before, nor do I wish to experience it again

I live in England and have only been seeing my usually fabulous rheumy since last December so, despite my rant, I do actually feel very lucky to be on medication that, up until now, has worked very well for me. Next week I have an appointment for a corticosteroid injection that I had been trying to avoid [my choice] so hopefully that will prevent any further bad flare ups.

Thank you again for your support and I hope things are going well for you.