Hello everyone, I'm new to this group and also to the illness. I found out I had lupus in October and now in a wheelchair. Can

[Deemolly]

Does the pain ever go on so much medication from morphine patches to table to make me feel better.

Also are there any support group in Manchester bolton Salford or anywhere in the north west

Thanks

[lillyanne]

Hi Deemolly. I'm so sorry to hear hat you have to use a wheelchair but I can completely empathise with you because I have severe back pain also. I use a stick but sometimes can't walk at all for the pain. Ive just had acupuncture to see if that helps because my meds just knock me out. I'll let you know how it goes. Sorry I can't help with the support groups but I'm in Wales. love and hugs xxxxxxxxxxx

[Deemolly in reply to lillyanne]

Thank you for getting back to me, please let me know how you get on. Other people have mentioned this to me also just scare and don't want to be in anymore pain x

[Shann07]

Hi im so sorry your in so much pain. Unfortunately chronic pain is a big feature of this awful disease, however i do get days when its managable as pain tends to flare up and down. I hope your pain relief is working for you, i think i support group would be great for you, i think we all need someone to talk to and moan about our experiences with people that understand, i only know 2 others with this illness so i too feel very alone and isolated in my loopie world! I find it amazing that i can connect and share things on this site with people who truly understand, its such a comfort :). Im curious to know if you had any bad symptoms before being diagnosed in October?

[Deemolly in reply to Shann07]

Hello, yes but I maxed it with pet holding. I have an illiostomy and arthritis. Then in October I desired to stop all medication and bingo this happens. I hate feeling tired all the time, work do really want me back because I'm using a wheelchair, so I bought a schooter now they are saying nobody can help me get from the car to my scooter because of health and safety some days I want to give up xx

Hope your feeling a bit better x

[suki65 in reply to Deemolly]

what medication are you on ? have you had your b12 checked and your vitamin d

[Slowmo]

Welcome to the site mollydee, you've certainly had a rough time of it. Again I'm in Wales so not sure of any support groups in your area, but I hope someone local to you replies, until then keep using the site to share your worries and woes.

I'm trying to go on a chronic pain management course as aside from being so debilitating being in pain brings down our mood too.

Wishing you all the best and hope things improve for you soon,

Slowmo

[Mainshah]

Hi deemolly,

Sorry to now your in pain, when I was first told I had lupus 6 weeks ago I was it so much pain just wanted it to end, and again afew days later hands and fingers swelled up and hurt so bad, but that night I was extremely tired.

I also hate feeling tired all the time, I was an active Girl worked all day long and dint feel tired once.

Nw I have a whole day in bed and just feel tired.

All the best and hope things get better.

[Deemolly in reply to Mainshah]

Wow you must feel terrible I was in hospital for six weeks make sure you rest and get the medication you need morphine patches and relevant medication for lupus. Don't let them muck you around get the treatment early so you will feel a little better.

[Mrsoliver]

Hi. I'm sorry to hear your unwell. I have been diagnosed last week and am also looking for a support group in the Manchester area. If I find anything I will let you know.

[suki65]

everyone what medication are you on and have you had your b12 and vitamin d3 levels checked?

amazon.co.uk/Could-be-B12-E...

[madmagz]

Hi Deemolly and welcome You don't say whether you are taking anything specifically for the lupus such as Methotrexate or steroids. I have taken both of these for quite a while ad have steroid injections in some of my joints twice a year which reduces the need for me to keep taking pain killers, my other symptoms have reduced a little and life has been a little easier. I have had lupus for early twenty years and since getting on here and finding extra information from other lupies I have found that this paired with what the medics tell me is normally the best way of getting on with a comfortable life.

I hope you find it as much use as I have and get plenty of information from fellow lupies

Good luck

Madmagz x