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Pain!!!

Posted , 5 users are following.

Lainey8
Lainey8

Hello!

I am after some more advice please! I was diagnosed with PSA with AS early on this year. I am currently signed off work, due to pain, anxiety and fatigue. I have just started my methotrexate through injections, after trying to take it via tablets and ending up feeling very sick! I am taking regular paracetamol, Tramadol and Gabapentin for the pain and am on a course of steroids. My inflammatory markers are normal, yet I am still in pain!! My doctor mentioned fusing in the base of my spine when I saw her last week. If this is the case, would that cause a sharp and heavy pain? It seems to hurt more after sitting still, walking and standing still. My other joints only seem to hurt when I am using them. I am also very lethergic. 

Thank you in advance x

2 likes, 70 replies

70 Replies

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  • sheila65847
    sheila65847 Lainey8

    Posted

    Hi Lainey,

    any news? Fingers crossed, let us know later x

    • Lainey8
      Lainey8 sheila65847

      Posted

      Hello!! I got the job!!!! I am so happy. Its really going to give me something to aim for. I will have to attend governors meetings and take the minutes, type them up at home and email them out. I think there will be more to it, but thats the main part. The first meeting isnt until the end of january, so that takes the pressure off for now. As its still with the school that I have worked at for over 7 years, they have a good understanding of my illness and are very caring and good at adjusting things for me. As I am still off sick I was worried about what would happen if I still wasnt fit for work in January. My headteacher said that I could do a phased return and the few hours needed for the clerk job, could be my phasing back in hours. They have given me a new role as support staff with the SENCO, for 3 mornings a week too! I will be office base (first time I have ever tried this sort of role as I am usually very hands on). I am feeling very blessed that I work for such a lovely school. 

      Thank you for asking smile x

  • karen69425
    karen69425 Lainey8

    Posted

    Oh wow well done I a really happy for you!!! xx
    • Lainey8
      Lainey8 karen69425

      Posted

      Thank you! So nice to have good news for a change!

      I will be checking how I feel next Thursday. I think that I over did it when I felt alright again! Have spent today in hospital! I went for  a walk this morning and realised I had very little control over my legs! They felt like lead and I couldnt move them properly. i went straight to my doctor and she suspected a collapsed disc and sent me straight to A+E. I had a thorough check up from the orthopedic specialist and also an MRI. Thankfully my spine is ok. He said that the disease has affected the muscles and nerves around the bones in my back and they have become irritated. He said I need to see a back specialist and have physio. I asked if the pain would go and he said probably not although it shouldnt be as debilitating. I have to have complete rest for the next week (with Christmas coming - this should be interesting). He said it will mean more life changes!!!! I cant believe this has happened the day after I got offered my new job!! 

      Please be very careful on your Tuesdays Karen! xxx

    • Lainey8
      Lainey8

      Posted

      Sorry Karen, forgot to say 'hooray' for your nurse coming before Christmas. Fantastic news xxx
    • sheila65847
      sheila65847 Lainey8

      Posted

      Unbelievable! After such a high yesterday. Please take care and rest. Karen, got Stelara on Mon but no news from nursing team yet.
    • Lainey8
      Lainey8 sheila65847

      Posted

      Thank you Sheila. Karen said that the nurse is now coming on monday. Thats good news!! My updated higher dose of methotrexate is out there somewhere, waiting for paperwork ect to be sorted so I can get it!
    • karen69425
      karen69425 Lainey8

      Posted

      Oh Lainey!!!! I don,t know what to say.That is terrible!!! I will certainly be taking more care. I haven't got a great amount of time now, as off to collect grandchildren, but I will message you tomorrow to see how you are. Take Care XX 
    • karen69425
      karen69425

      Posted

      Hi, How are you? Hope that you are not in too much pain!!!! I am washed out and have more pain  today.Busy but very enjoyable time with our granddaughters. They only knew about the panto yesterday, as we were not sure that they would be clear from chicken pox!! Definitely going to have a chilled week!!! Take Care XX
    • sheila65847
      sheila65847 karen69425

      Posted

      Hi Karen,

      Have you had yyour Stelara yet? Got my delivery, no word from nursing team yet. Grandchildren - we were babysitting until 3 am th is morning , we've been out for Sunday lunch so I'm retiring to bed for a while. Wonderful time of year forllittle ones! Xx

    • karen69425
      karen69425 sheila65847

      Posted

      Hi Shelia,

      Nurse has just left, all done.She was saying that a number of her patients have had really good results!! Lets hope that we do as well!! Have you tried contacting nursing team? Defintely a great time for the grandchldren. I have now be talked into separate sleep overs, and baking. Should be great fun.xx 

    • Lainey8
      Lainey8 karen69425

      Posted

      Hi Karen! Thats brilliant that your nurse has been and it sounds really positive. Shall cross fingers for you!!! Sheila - hope your nurse gets a move on! Will be very interesting to hear how you both get on! I've not had any word about my increased methotrexate dose! Cant see it getting here before Christmas now. 

      I am still laid up, which is probably not doing the rest of my body any good. Numbness comes back in my legs as soon as I stand up! Think I might have ro visit my doctor again tomorrow morning to see if there is anything else I can do, to get me through Christmas and the 12 people I will have in my house for 3 days!!!!!! Also the painkillers, steroids ect. dont seem to be helping with the pain! I hope that you both and everyone else out there who is struggling, have an a pain free and magical Christmas! Here's to the new year bringing a fresh start! smile x

  • KupKake
    KupKake Lainey8

    Posted

    Hi Lainey,

    You sound exactly like I was!  I felt very sick, I was on the maximum dose of Methotrexate, then they put me on injections to bypass the gut and hopefully avoid the sickness and that didn't work.  I felt so tired and it wasn't really working, I was still in pain.  I was at the end of my tether, I felt like I couldn't do anything and finally I saw the consultant, they did the checklist of how many inflamed joints I had and I was told that I qualified to go on biologics (v.expensive) and so I was put on Enbrel (Enternercept) which worked a little bit for a while, so then I was put on Methotrexate as well and amazingly everything is in remisssion! No Psoriasis (I was covered in bleeding, hot sores) no PSA, I feel great!  I do still get much more tired than I used to, but I'm able to go to Uni, look after the kids, etc.  I'm not lying on my bed crying with the pain...

    Maybe you qualify for biologics?  It has been life changing for me!

    xx

    • Lainey8
      Lainey8 KupKake

      Posted

      Hi

      That sounds brilliant! It must be such a relief to be able to resume your life! Im really pleased for you. 

      I really dont know what is going on with me. My inflammatory markers seem to be consistently low! The pain comes and goes in my wrist, shoulder and elbow, but isnt really that bad. Its the back pain that causes most of my problems. My recent MRI didnt show anything up! I dont understand it all. Something is causing the pain and the leg tingling and weakness and I am having to sleep on and off during the day to get through. Im still signed off work too! I am so confused by it all. I am not seeing my consultant until March!

      The biologics sound good though. maybe thats something they will consider for me. Thank you for your message. I hope that you continue to feel better x

  • KupKake
    KupKake Lainey8

    Posted

    Hi Lainey,

    Hasn't your consultant told you about inflammatory markers and PSA??  If he doesn't know about this then he's not very good and I would change to a different one immediately!   With PSA the inflammatory markers are usually low, as averse to 'normal' rheumatoid arthritis where they are high (see here: http://www.ncbi.nlm.nih.gov/pubmed/17828345).  So the usual tests for rheumatoid arthritis don't usually bring back the same results for PSA.  

    I had the most dreadful pain, I was falling asleep all the time, I had scans which showed nothing also, but that doesn't mean it's not PSA!!  It just means your joints aren't damaged yet (a good thing!).  If you are in a lot of pain now, make them change your appointment to earlier than March, that is a ridiculous long time to wait when you're in a state!  

    Biologics are at the top of the 'toxicity pyramid', which means they are the most powerful drugs for PSA and Psoriasis but they are also the most toxic.  You will read all kinds of horror stories about them and I am loathe to take any medication, but my life had become unlivable. I had zero quality of life, I couldn't do anything!  I don't have any side effects and I am now able to live my life, I had no choice, I had to go on the biologics.  

    You deserve to live a pain free life, you need stronger meds!  Push them to put you on something else, the ones you are on now aren't working!!

    Take care xx

    • Lainey8
      Lainey8 KupKake

      Posted

      Hi KupKake

      Thank you so much for your reply. You have made me feel so much better! It was one of the doctors at my surgery that told me about my  inflammatory markers being low - so I am not having a flare up! I am going to print off that ink you have sent me! I was thinking that I must be going mad, Sheila had mentioned this previously, but I thought it might not be the case with everyone, especialy as a doctor had said it! I will be seeing my nurse in a couple of weeks, so shall see if she can push my appt forward. I have managed to make it through Christmas, but am laid up now with awful pain and I had to go to bed early and keep laying down over the last few days. Even my children stayed up later than me! My higher dose of Methotrexate is arriving on the 4th Jan! The consultant that saw me when I was taken to A&E, said that the disease has had a knock on effect and has irrritated my nerves and muscles around my spine. I am still unable to walk far without my legs soing weak and I have to shuffle my feet to move! He has referred me to a back specialist! I dont know what he is going to do!

      You say that you are now able to live your life, does this mean you are able to do everything? Do you still get tired and pain?

      Thank you again for your very postivie and helpful reply. I am so pleased that you are able to have a positive outcome. That will benefit a lot of people who read this! smile

      x 

    • KupKake
      KupKake Lainey8

      Posted

      Hi Lainey,

      Glad it helped smile  Don't be put off if your symptoms aren't classic, I was often in so much pain but had no swelling in my joints!  The nurses would squeeze my joints and if they didn't hurt I was treated like there was nothing wrong, although all I wanted to do was get into bed and cry the pain was so bad, I tried to describe it to them as feeling like 'toothache and pain in all my joints' but they were fixated on the fact my joints weren't badly swollen.  I was left off all medication for nearly a year, and by that time my joints were very badly swollen, the rheumatologist took one look at me and put me on biologics.  I had to drop a year of Uni, my husband left, I could bearly look after my kids, I couldn't walk down the street from the pain and exhaustion, I wish I had been put on biologics earlier.  So now I am back at Uni, looking after the children without my husband.  I have zero pain, no psoriasis and I am able to do everything I need to do.  The only thing I still have is the tiredness which will hit me maybe once every few weeks and I'll fall asleep at 7pm, or in the middle of the day, but no pain!  

      Take courage in knowing it can turn around.  I was suicidal, I felt like I had become disabled in a very short time (a year) and it was so depressing, but if you can get on the right meds you will get your life back!  You do need a rheumatologist though...  

      So yes, I am able to do everything!  I have zero pain and a tiny bit of tiredness... it can improve!!!  Being on the right meds is life changing, I tried Sulafsalazine, steroids and Methotrexate and had bad reactions to them all until I found Enbrel (with a very low dose of Methotrexate).  It's trial and error to find what works for you, it took me 2 years, but I'm sure you'll find your solution sooner!

      Take care, don't lose heart, keep pushing for those appointments! xx

    • Lainey8
      Lainey8 KupKake

      Posted

      WOW!!! NO PAIN???!!! ha ha. That has really made me smile! what a lovely thing to look forward to. Its also very good to hear that the fatigue gets better too!!! I cant wait!!!!

      Im so sorry that you had to go through so much to get to this point though. It must have been really hard for you to manage with the pain and fatigue and then to have your husband leave you, especially when you have children to look after! That must have been a very low point for you. You definitely deserve to be happy now!

      Thank you so much for giving me some hope and good advice! Long may you continue to feel well. Take care xxx

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