Rubbish weekend

Hello All,

I am hoping that by the time I have finished writing this post my painkillers would have taken effect and I can get on with my day.

It hasn't been a great weekend so far. I think I am having a flareup, I'm not entirely sure, but I know I feel dreadful and just want the pain to stop. For the last couple of months my hydroxychloroquine doesn't seem to be doing it's job and painful joints have been creeping in here and there. Got home yesterday after food shopping with my daughter and felt absolutely knackered. She said I began zoning out while at the coffee shop, I can't really remember, all I knew is that the life was being sucked out of me. By earlier evening my joints were hurting, not just the knees or elbows, it was everywhere. I took my medication and was in bed by 9. I had great difficulty falling asleep because of the pain. I must have eventually, but spent most of the night tossing and turning, overheating and crying as I couldn't find a comfortable position. It hurt so much throughout the night, even my fingers hurt, it felt like they were being pulled through a paper mill. When I opened my eyes this morning my entire body was screaming. I hurt in places I didn't know existed, it wasn't just my joints but my biceps and quadriceps. Both arms and legs felt like I was carrying heavy weights. I eventually got of bed, made my way to the kitchen and had some toast so that my stomach could cope with the numerous medication that followed. Now I am sitting on my bed waiting for the painkillers to take effect, praying they work quickly.

At this exact moment it feels like I can't do this whole unpredictable illness anymore. I am fed up of being unwell . I can't remember the last time I woke up and felt great, ready to take on the world. I have always been a glass half full person, but today it's totally empty and I just want to be normal again. Taking pills to manage symptoms can't be the answer. In today's medically advanced world you would think there would be a cure for autoimmune conditions.

OK, storytelling, self pity rant is over. Time to get moving. I hope your day has started off better than mine.

Have a good day.

Nicole2000 😢

6 Replies

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  • Sorry to her you're having a rough time. You're not alone. I think many of us have those days as well. I'm in bed ready to get sick, almost 2:00am wondering when will this stop, not as much pain tonight, but it's always something. Hang in there for that better day. I keep looking forward to it. xx

  • I completely feel your pain (literally). I had a flare like that a couple of weeks ago - that feeling like your whole body is pulsating with pain and inflammation. The thing that works for me is a steroid injection at the hospital - is that an option for you? Within a few days it makes me functional again and has been a lifesaver for me many times. Hope you get some relief soon x

  • I have had a couple of nights this week with pain in my hip and my left hamstring and knee that wakes me up. I sleep with a body pillow that is a little worn down. It didnt help with the pain. Eventually I dose off. But awake in the morrning with terrible shoulder pain and i cant bend my hands into a fist. I too, certainly get tired of it. Hope you feel a little better tomorrow to take it on.

  • God bless you my fellow sufferer of THE WONDERFUL LIFE OF LUPUD...sorry but for me rn STRESS is actively causing a flare up.. I so can

    Related to the joint pain although I'mto this day confused about what exactly is causing my joint pain bc in high school senior yr I had to have surgery on my r hand and left foot joints my hand joints got so bad I couldn't do my school work...anyhow

    They told me after biopsy I definitely have rheumatoid arthritis but it didn't kick in severely until later in life as they predicted it to start later in life however when I complain of it my Dr who wasn't my Dr back for surgery in high school says it's from lupus and it seems to only come into play badly w flare ups so I am very confused... Now back to you hun I think you should talk with your rheumatoidology specialist about first getting on something for sleep and since STRESS always triggers flare ups why not try something like clonapin I was extremely hesitant bc of possible addiction but I only take it the nights that I come heck over high water's CANNOT sleep averages to be two times to three times a week during flare ups and no flare ups one to twice a week and have gone weeks in between taking it and after four years for sure I have no symptoms of any addiction and the medication has been a bkessing. Pain meds we all have to take eventually causes us medically addicted which is in itself nowadays another burden bc of people's judgement... so I didn't want any parts of the clonazepam but it truly helped me I hope you consider it. Also, I've looked up what is most commonly helpful 're pain meds I've seen so many on exactly what I am on...and seen a large number of lupus sle patients on the same as me

    Which is dilaudid (hydromorphone) used with fentanyl transdermal patches...must be the combination but it more so than not has a good handle on my pain. I hope this helps I also find to do mild stretches everyday and before bed to help me, very beneficial to take time to just stretch slowly and gently as may muscles you can....good luck....stay strong n positive and I'm always here for you all, my second family a family I day bc we're all joined together by this nasty disease, we understand exactly what your going through or at best WE also CARE and would never say I'm tired of hearing it...us speaking of our pain, sickness, other diseases we get as a token from our dear lupus .... How many of you have been ignored, no time, understanding, compassion or just plainly told I've heard enough or talk about something else I'm tired of hearing you (us) talk about your lupus or pain...I don't get them...but here we are a second family it's y outlook....next time you feel there's no one who cares come right back here and let it all out...received here from all I've read nothing but compassion, understanding, hope, helpfulness and true unconditional thoughtfulness and love. Feel better soon!

  • Hi Nicole

    So sorry to read your having such a lousy time with joint pain . It's always worse first thing in a morning before our pills can kick in. I hate mornings now for this reason. I'm just wondering are you due to see your Rheumy soon?. You could try bringing appointment forward especially as you say Hydroxy may not be working !. How long have you been on it?. You can also have a short course of steroids to help your symptoms. Could your GP do this for you?. If your needing too many of these over time then it can prove to your Rheumy that your main treatment needs changing!.

    These are just suggestions that might help you thru!. It's a tough illness. Hope you improve soon. X

  • Thanks everyone for your kind words of wisdom and advice.

    I'm afraid rubbish weekend has turned to rubbish Monday. I woke at 05:45 this morning. My internal clock works well no need for an alarm. On opening my eyes I didn't feel too bad, in fact, I felt like I do on a 'normal' days (what's normal, I hear you say!). I sat upright and then it hit me. The pain started up again like switching on a car engine, it came rushing all at once. I did the same as I did yesterday, I got the pain meds. and had the hottest shower possible. I also had the added chore of sending the dreaded email to my workplace, saying I wasn't well. They are understanding, but I can't see this lasting forever.

    I definitely feel low in mood today. The weekends' suffering together with this mornings' lack of improvement has left me feeling like I have a cloud hanging over my head. I don't want to be depressed, I was really down when this all started 2 years ago and I don't want to go to that place again. But this condition forces you in that direction. I feel like it sucks the life out of you.

    PAUSE ...

    I had to stop typing for a minute as my phone call to my GPs surgery eventually got answered. I was number 25 an hour ago and eventual got to number 1, only to be told that prebookable appointments are all gone and I would have to call again at 8:15 tomorrow to get an appointment. I started calling at 8:15 today!

    Good old NHS.

    OK plan 2 - to call outpatients to see if rheumatology appointment can be moved forward. I am not holding out much hope of this happening, but will try.

    Have a good day all.

    Nicole2000 😢

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