I am not looking for sympathy just people that understand. And I suppose to get these bad feelings off my chest.

Having lower back pain with mega stiffness and fatigue. My Rheum is ? Psoriatic arthritis. Current dx is sero neg inflammatory. Got to wait for an MRI to confirm sacroilitis then I can have another steroid injection. Last one in Nov worked well but only lasted about 6 weeks. My knee is swollen Sharp pains and feels wobbly.

Just feel like crying everything is so much of an effort. I roll out of bed walk with furniture just to get to the toilet. Driving is painful. Hurts to sit at work but then more to get up and try to move.

I walk the dogs to try to keep moving but then I am exhausted. Cannot sit in an arm chair at night so go to bed.

Didn't feel like telling the Nurse all this a couple of week ago because I am fed up of moaning. Think she knew I had problems because I had to use a stick.

Sorry to whinge I just feel really low and cannot speak to anyone. I know you people will understand.

Then feel guilty with work because I am not working over to cover.

Like I say do not want sympathy just thought if I wrote it down to you good people I may feel better. Well a break from waiting for postie for a letter with MRI date.

Off to work now thank you to you all for reading.

32 Replies

  • Hugs darling you moan all you like if it helps you we are all here and going through similiar things so your not alone.xxxxdd

  • Thank you Sylvi. You are doing brilliant with your weight loss.x

  • Hi Moomie, I'm sure we all know how you feel and it is good to get it off your chest. I feel like I'm constantly moaning at the moment with my knees/legs screaming, stinging, clonking, giving way and fatigue, lack of sleep etc, etc, it just drags you down doesn't it! The weather doesn't help either, so gloomy!

    I hope you pick up soon Moomie - roll on Springtime. Sending you a Big Hug xx

  • Thank you. It does get you that way. Yes a bit of sun would be good. Hope you feel better soon x

  • Thank you Moomie x

  • Oh moomie, do try to talk to your nurse, you're so not moaning. Pm me when you've done your shift if you feel up to it. x

  • Thank you as always. It was a long shift or felt like it.x

  • Know just how you feeling. I to am struggling really bad with lower back pain, Carn't sleep properly, agony to sit And worse trying to walk. This last lot of really cold weather has made it worse and just praying for the weather to go warmer. So bad yesterday, just sat and cried for half the day. Hate January anyway, a really depressing month and a this on top it's just too much. Let's all hope Spring is here soon and we all feel better. Xxx

  • Thinking of you Moomie and sending you gentle hugs lovely.

    You're not moaning hunni you are sharing your pain, your worries. We all understand and no doubt we all have been there and have shared our worries here too. This is the perfect place to come to to share, we can sympathise, suggest, understand, and send you our love. Xx

  • You are all great people, and yes it does help. The understanding is the most important thing. Thank you x

  • All sounds very familiar. The ups and downs are constant so maybe your ups are around the corner! Take care, Doreen

  • Thank you x

  • You are not a moaner! Tell your nurse, they may be able help.

  • Thank you, I do feel like it. Will consider ringing.x

  • Cyber hugs coming your way....xxx

  • Thank you, feel a little happier this am now I have got going and no work today x

  • I've got PsA and I've been pretty much where you are, apart from spinal involvement. For ages I couldn't walk and then 'progressed' to walking hanging onto my husband, painful step by painful step. I was just in zombie land with fatigue and pain and disability. Things have changed over the years, A LOT and for the better.

    What meds are you on? The right treatment can make such a difference. Let yourself cry, let yourself feel bad and then dare to look forward as well. This may not last.

  • Positive thank you for your reply. Only just noticed my reply to you was not sent. I am a bit dippy at the moment. I was interested in your reply with you having PSA. I do not have psoriasis but my Sister does.

    I am hanging onto things to walk too. The past couple of morning's have been bad.

    I take Max 17.5 sulpha 3g hydrox 200 naproxen 1g with stomach protector tramadol Sr 50mg and paracetamol in between. The Dr said if he changes diagnosis I could get onto anti tnf easier. My Nurse wanted this in Aug and I passed assessments but he wouldn't authorize it. Who knows. I will be happy just to have a depo medrone or oral Preds. I know this makes a huge difference. Cannot have it until I have had my scan though.

    Thanks again Moomie.x

  • I don't know how you can work, feeling like this. It sounds as though you urgently need help, perhaps starting with rheumy nurse. But unload to us here, there's a lot of understanding

  • Thank you Cathie. Next week we are short not doing overtime and I think when we have another staff member from thursday I am ringing in.x

  • Hello moomie, we all feel or have felt like that at sometime in dealing with our conditions. I wish I had a magic wand. One thing I know though is, we really must tell our rheumy/GP/consultant how we feel. Don't think you're a moaning ninny. The more they know how you feel, the more they can help you. That's there job. They want to help, but we have to show them how and what we feel. I'm sure you know all this anyway. Big hugs and best wishes.

  • I know you are right. My problem is I think they will know. A couple of week ago I felt that bad I just wanted to go home. She thought my shoulders where bad but really I was huncehed up with my painful back. My fault I know. Do need to speak more.x

  • A couple of weeks ago I off-loaded onto my poor GP when she she asked me sympathetically "But how do you really feel?", she said I must ring the Rheumy nurse, who was also a good listener and actually rang me back a couple of times to check how I was progressing. Although they couldn't do anything much in the practical sense to relieve the pain any more than they were already, the understanding helped me to feel better about carrying on with the treatment.

    So do let them know (as well as us) - a trouble shared is a trouble halved.

  • I am going to take your advice and speak to my G.p next week. Known him a long time. Thank you.

    Hope you are feeling better x


  • This sounds like me a year ago. I had VT guided inj into my sacroiliac joints which worked wonders. I'm on methotrexate and simponi and have no stiffness anymore. I still have some pain so switching to injecting methotrexate to see if that helps. If you don't tell your rheumy nurse they can't help you. You don't need to suffer and it's not moaning, you feellike that because you are so down with the pain. Wishing you well, there is light at the end of the tunnel even if it does take a while to get the meds right

  • Thank you. I am pleased that worked for you. Hopefully when I have had MRI I can get my treatment sorted. He is going to increase Mtx I do have injection now. Can also have some steroids which help.

    Thanks x

  • Thank you all so much for your replies. You are all amazing and it does help to know you have all been there. I am going to reply to you all individually because you have all gave great advice. I was too tired after work to reply yesterday.

    Thank you again. I am thinking of speaking to my G.p next week. I saw him a couple of weeks ago for some bloods and he said he had never seen me struggle as much. He cannot give me steroids because it would mask the inflammation on the scan. Hopefully he may be able to chase up radiology to get a date. Just don't want to break down in tear in front of the medics or Nurses.

    Thank you all again. You given me more inner strength.

  • Good to know I am not alone, but not in the way that you are having a rough time too. We have a week away coming up in a log cabin, I think I am spending 7 days in the hot tub and not getting out. Thank you.x

  • Take care ,we all feel like this now and then.

    This wretched disease takes up so much of our time and energy. If we are not worrying about this disease we are trying to get through our days as best we can and it is a struggle heaving our bodies on and on each day. I know exactly where you are coming from.

    Moan all you like,I am here to listen .

    Take care.

    Jane X

  • Thank you, you all have your struggles I know. Think sometimes it just depletes your energy too which causes problems. My house is so untidy which I feel bad about. Think it is the add on like this that also gets you down.

    Everyone on here is great and so understanding. It helps so much.

    Thank you x

  • I understand completely! I try not to whine to my sweet husband, because he gets so frustrated and upset that I'm hurting and he doesn't know what to do to make me feel better. So I come on this page to vent at this horrible disease as well. We all understand exactly what you are going through, so whine away! We all just want to feel better and quit hurting...we are all in the same boat....so might as well paddle together! :-) Hugs!

  • Sorry you're feeling so miserable Moomie,

    you can always ring the helpline any-time to talk. We know that sometimes just being able to offload to someone who understands can be very beneficial. Do call us if you need to:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best wishes

    Beverley (NRAS Helpline)

You may also like...