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Hopeless

I have had PsA for about 5 yrs but it has really progressed in the last year and especially the last few months. I have to travel about 4 hrs one way to find a rheumatologist that takes my insurance so up until now I have been just seeing my regular doctor. I am on Embrel, methotrexate, Neurontin and antidepressants. Oh and I also tried Lyrica for a few months this yr but nothing seems to be helping.

I went on Saturday but my doctor wasn’t working so I had to see the other doctor. He gave me a steroid and Toradol shot with zero relief so I have been in excruciating pain all weekend. Just waiting for tomorrow morning when I can tell my doctor what is happening because it’s new and suddenly started Friday and the intensity is almost too much for me to bare. I am office manager at a telecommunications company so I am sitting at a desk most of every day. I have had some neck pain before with a knot and swelling but not like this, it started like Thursday and just gotten worse.

And both of my wrist right below the thumbs feels like whatever band that is, is so tight they will snap into soon, incredible non-stop burning pain just like my neck. I’m so depressed because I don’t want to live this way where every day is just struggles and pain. Lying in bed already in so much pain and then my feet and hands go to BURNING so badly all I can do is rub them. I am so worried that my doctor will not do anything in the morning to help and I will just have to keep suffering. Saturday morning my blood pressure was like 108/155 and they took it a few times but I was crying almost inconsolably and in a severe amount of pain so I wasn’t surprised but very concerned. I am a single mom of 2 and work full time at least 40 hrs/wk with lots of responsibilities. I have people counting on me that I am letting down because I have been in so much pain all weekend. It’s a struggle just to exist. I just pray I can explain it to the doctor so he will understand and be able to help me.

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Comments

  • josie
    5 months ago

    I truly understand your pain sounds so familiar, I am on my third biological drug
    Enbrel helped for abt 3 months and then it would wear off in abt 2 wks so I moved to another drug, now on Cosentyx and my skin is clear after 12 weeks but joint pain and exhaustion continues. It’s a horrible disease; I’ve done better with eating healthy foods, hot baths and prayers every day. Have to give everything to the Lord, surrender yourself to the lord and ask him for strength and healing, that is my only salvation as I continue to struggle with this. Will pray for you as well. God Bless

  • pbarry23
    5 months ago

    Hello,

    I read your story because the title, “Hopeless”, spoke to me. I try to stay hopeful but have felt less hopeful over the last few months. Like you, my disease has decided to stop responding to medications and my condition is deteriorating. I feel like I’m talking to my doctors but I don’t think they understand how bad it is; maybe they feel frustrated too.
    I hope you are doing better.
    Peace,
    Pattie

  • Rebekaus
    10 months ago

    Hello, it’s awful the amount of pain you have. I know it’s really frustrating to not be able to receive pain medication that works. I myself have been prescribed 4 medications for back pain, Im on my 5th, Tylenol with codeine, helps very little but when it wears off the pain is right back with a vengeance. I am on methotrexate, I am on Enbrel, rheumatologist wants me to start Taltz instead of Enbrel. I requested a MRI of my back just to confirm its from PsA. Dont feel guilty because you have PsA and letting people down. you didnt ask for PsA, we have to accept the fact that we will have PsA symptoms for the rest of our lives. I feel frustrated that I cant clean my house like I used too. I look around and see so many things that need to be cleaned and organized. I get depressed often, it’s summer and I havent been swimming yet and probably wont. I rarely leave my house, and im always waiting for the next fall. I fell a few days ago and have a big bruise on my back. I hope you get relief soon. I wish I could give you advice to help. Take care.

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