nanny412 years ago

Hi LillieAlfie, sorry to hear you are feeling so down,i do not have lupus but my daughter has 3 year old twins,and she does have lupus,so I can't really help you to much,but can imagine how you must be feeling do you have a good g.p or nurse,maybe they can help with different mess for your pain,my daughter is 26 and works full time and has only really just got her pain under control.hope you get sorted,take care,Salndy

Jennie_10312 years ago

I found pregablin helps with the everyday background pain best - it just shifts the nagging pains quite well. Not the extra stuff when you move wrongly but the low level aching at least. Worth asking about perhaps for you.

And don't forget paracetamol - it seems so simple but it can really help with very few side effects.

Jennie

LillyAlfie12 years ago

thank you.

AngelaW12 years ago

I suffered with awful pain on being diagnosed and I keep it under control with Ibuprofen, paracetamol and Tramadol. I always start the day with 2 paracetamol on waking up and on bad days I take the maximum amount of Ibuprofen and paracetamol. I take a 'modified' release Tramadol at night and keep a supply of 'normal' Tramadol for when I know the other two pain killers aren't going to do the trick. Tramadol does make you sleepy though, so perhaps not the best for a mum of two young children - speak to your gp or rheumatologist they should help you. Good luck on getting it sorted out, Angela xx

Hidden12 years ago

Hi Lilly. I was diagnosed 4 years ago. In the beginning ibuprofen worked for me and chiropractic adjustments for my arthritis, neck pain and headaches. I stopped going to the chiropractor and just relied on over the counter pain meds. This past year though, the pain got even worse. I was in pain from the moment I woke up to the moment I went to bed. I had learned to juggle meds by then, using flexeril at night a couple of times a month, ibuprofen and Tylenol when necessary. Nothing worked anymore to take the pain away. I felt like I was going crazy. Hopeless. I went to my rheumatologist and she finally put me on plaquenil/ hydroxychloroquine about a month ago. It took my pain away quickly. For most it takes a couple of months to feel the full benefits. I went from being in pain 100% of the time to maybe 2%. I can smile again! Maybe hydroxychloroquine will work for you? Suggest it to your rheumie. He/she might not be aware of how much pain you are in. Hope this helps.

Corrosion12 years ago

Hi LillyAlfie,

I was diagnosed last November and have had pain since last summer. Ibuprofen didn't work for me but when I felt a fever coming on I would take paracetamol which helped. At one point the pain got really bad (I could hardly use my right wrist and horrendous back pain) and I was struggling to keep up going to work. My Doctor put me on Naproxen which has helped. I have now been put on Quinoric (hydroxychloroquine) which is meant to take a few months to kick in but what has helped my pain and tiredness is taking omega 3 fish oil supplements (1000mg) 3 times a day and a 1000mg evening primrose oil supplement once a day. My rheumatologist recommended the fish oils to me and it really has helped me.

I hope the pain gets better for you.

LillyAlfie12 years ago

Hello mollydolly! My body didn't like hydroxychlorrquine so they put my steroids up to 10 tablets a day and iv started a new drug called Azathioprine it hasn't got int my system yet so fingers crossed my body take it!! Iv tryed so many tablets for lupus and nothing seems to be working iv only been diagnosed since last October so still early days for me! Iv been told to try pilarties if that's how you spell it lol?! And meditation?!

carrie6712 years ago

Hi

I take Mepacrine as Hydoxy made me feel worse. It has worked well for me, it might be worth asking about.

helentad12 years ago

Hi, I understand exactly how you feel. I have now 5 year old twins, I was really ill after infection from C-Section then due to that I was diagnosed with SLE and Fibromyalgia. I would start by saying if they sleep you sleep as I found if I was tired the pain was worse. I now take Tramadol with Paracetemol and have a pain patch that is on my arm and slow releases morphine.

We live in a Sure Start area and we were lucky enough to get help from them to pay for 2 sessions per week per child in a local nursery or child minder. You could also try asking HomeStart for help. They have volunteers that they match to your requirements and they come in and help you or just play with the children etc.

I don't know your situation if you are employed or have a partner but maybe a social worker for you might help as they will refer you to these people or your GP if they are any good. Also I know its early but when they children are 5 they can be refered for Barnardos child carers group that do sessions and days out but also holidays when they are older (they collect them as well).

Anyway, I wish you well and if you need give me a shout. I live in N.Wales near Chester

Best wishes Helen