Throbbing pain.😢

Good morning, just sitting here waiting for my body to adjust, then I will get up. The pain I have is so bad, my arms, shoulders, knees, fingers are all throbbing with pain. I am having a double birthday party here soon for my son and daughter, for me to get things done and do all the running around, I have to take prednisilone the night before so I can achieve tasks. I was up on a chair last night putting up fairy lights in the pergola, thank god I didn't fall. Does anybody else have pain behind their knees and when you get up from sitting down, do you feel like your knees are going to crumble? Well time to get up and moan and groan as I do things.

Have a great day Lupeys.❤️

16 Replies

  • I get the same pain. Especially when getting up from sitting down and getting out of bed.its difficult when you have young kids waiting on you to wake up and give them breakfast. My eldest is 10 and youngest is 3 yrs old.I'm not on steroids painkillers but I feel I will have take it as my pain is becoming unbearable.

    Hope you have a great party and try taking it easy. Xx

  • Thank you Ramada. I hope you get relief soon. We really don't do ourselves any favours by not taking anything for the pain do we?

  • Razoo,I'm sort of person who who went through four labour with even a paracetamol but after being diagnosed with lupus last November and expecting my fifth baby,I could really do not only painkillers but something stonger.. Life is lupus is hard but we find our way to live a better life..take it easy xx

  • Razoo sorry to hear your in pain..hope you feel better and get to enjoy he party..take it easy xx

  • OMG your 5 th, I certainly hope you have wonderful well behaved children, for when you are in pain.

  • Yes Razoo I'm feeling blessed as it wasn't planned pregnancy especially when I found out I'm expecting just a week after being diagnosed. My other four boys were all healthy and I didn't have lupus then but this has been my toughest pregnancy with my emotions being everywhere. Physically its been extra tough on my Razoo,my kids are good and i cant complain much..their all boys and this 5 the one is going to be another so you can imagine..xx

  • Hi Razoo.sorry u are not feeling having the same problem at the on a reducing regime of my steroids,I'm now taking 5 mg daily from 10mg 5 months body is hurting and I have sleep deprivation. I had returned to the golf course,playing 18 holes and playing well.yesterday I came off after the 15 exhausted.I am going to contact my dermatologist this morning to see if i can increase my dose of steroids and fell well again.

    As far as sleep goes,I'm getting about 4 hours !!! so when I get up I'm exhausted.

    Perhaps u need to be on regular steroids for a while? Keep cheerful,difficult I know.

  • I hate the steroids, but they help. But I also don't want to stay on them because of all the other things that you can get by being on it too long. Thank you for your response, hope you get well soon.

  • I have the same pain behind the knees but it is a ligament issue - I had a session with the osteopath the other day where she "kneaded" behind my knee (I was screaming in agony) but after that the pain improved. Yesterday I had another session and it continues to improve. So it isn't only a matter of taking a painkiller to mask the pain but also finding alternative ways to address the issue.

    As for the widespread joint and muscle pain - I know it too well, it is overwhelming and so worrying. When I get that I know I'm in a big flare and, like you, reach for the steroids.

  • It's a bastard this disease. Take care purple top.

  • I cannot take steroids, but have found that methotrexate has helped my pain a lot...and when it is really bad, tramadol helps, but I guess it is down to what is best for your body. Do the least you can physically for your children's party and maybe get them to play at being waiters/waitresses .... might help! Good luck and take care.

  • Music teach, I will be taking 10 mg pred the night before the party so I can function.. I'm looking forward to it, as I don't see my son a. Lot since he moved out of home and into another state, my 17 year old will have her friends over, so I want them to have fun. I don't want to be sitting doing nothing. I do find that while im moving I am somewhat better, if im stationary i seize up, lol

  • Yes, I try to keep moving, too! I do hope you have a lovely day with the party, and make space for a good long rest afterwards! Take care!

  • Hello Razzo,

    My daughter has been a SLE survivor for 10yrs. She had a stroke at 16 and shortly diagnosed with APS then lupus. She has been on prednisone for that long as well, she is alergect to plaquinil . The pain from a Lupis flare is horrible. The prednisone has left her with Avascular narcrossis in both ankles and now the knees. Be carefull how much you take and how long. Just took her to Mayo in Jacksonville fl. And still to this day prednisone is the only help she gets, even tho that is killing her slowly as well. I hope and pray to god that you get the relief you need.

  • Hi

    Your message was so close to my experience I had to smile...tonight is a party for my exams...age 16... Alcohol is inevitable...and like you..the energy required to plan, cope and then retrieve what may be left of my house tomorrow fills me with some dread...luckily today has been a relatively pain average day but high fatigue...and I can only imagine tomorrow...I have never take steroid the night before...doew that not keep you awake? I would give anything not to wake up in pain though. I am on 10mg each morning...and due to start methotrexate on Monday after a long wait since mycophenalte stopped working for me.

    hope your party goes well..and that You are ok too!

  • Dmptree, thank you for your well wishes, Pred doesn't keep me awake. I have woken up in full pain armour, my hands are swollen n tight, im texting very slow, I cannot close my hands. Can't lift my arms, well you know the rest. Do you want to be FB friends? I'd love to see photos of the party to.

    Have a great time.😃🎂

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