Out of control and at the end of my rope!!!!

Been in insane pain and extreme exhaustion....praying my appointment with my new RA doc tomorrow has something that will help to ease this hell. Been like this for weeks now. Medication the last doc prescribed isn't helping at all. Extreme swelling in my hands and feet, joint stiffness and pain. I know others have been here, how did you get through the search for the right medications.....so many have not worked or worked for awhile and then had to be switched due to extreme side effects or not working as well as doctors had hoped. Been diagnosed for just about 5 years now....some days I just want to give up.

17 Replies

  • Oh Justterri713 I feel exactly how you are feeling. I'm so sick and tired of being told that my RA is mild and I don't need harsher meds....I do not want to be "proud" of having "mild RA" so that this horrific disease can continue to progress!!!! I too will be getting another opinion on my meds.

    I wish you the best


  • Hi , if you can drink some extra concentrate green tea (can be the one whit no caffeine ),I use mint tea to,I let 3,4 bags stay in hot hot water for 20 minutes

    Sometimes all day ,no sugar ,is like a medicine to me ,help me a lot whit my pain, and swelling

    But we all know ,the only think that will help immidiatly is a syringe of

    Predisone in your arm .i been there many times.

    I personaly use to ,fish oil, salmon oil, flexsead oil, prime rose oil , many vitamines and minerals also I drink

    a whey protein drink the low sugar one that help me a lot whit my fatigue ,I use the swiig supplement the matrix one

    The one whit papain and bromelain they are antinflammatory enzyme from pineapple and papaya

    Good luck to you


  • I mentioned you in my update. I firmly believe diet and the things we put in out bodies cause us to feel worse. It is always trial and error. I will be trying a few of the ones you suggested that I haven't heard.

    One that I loved and Keurig no longer makes is pomegranate green tea.....I found some antioxidant natural pomegranate juice, I will be adding this to my tea.

    I can't thank you enough for responding. Bless you!!!!

  • I am so sorry for the pain I have been down like you And have been taking cymbolta for a couple of months and feel much better now ,

  • He talked about this medication today...It may be my next trial. God bless you.

  • I am right there with you!! If it wasn't for my kids (Graduating HS this week), I probably would give up. Diagnosed 2 years ago. Nothing has worked yet. Waiting for insurance to approve biologics. Hope your new Dr can help you.

  • The insurance companies and getting approval can be daunting, but hopefully you will get the approval soon so you can begin treatment.

    Did you know that some of the prescription or manufacturers of the medications those of us with this disease require, have discount for this that may need help if costs are extreme. My pharmacist's help me out and look into this for me, it has been a saving grace.

    Praying for you and getting the medications approved.

  • I found that Humara had a payment assistance. I didn't use it but it came with a card for it in my first box.

  • Thank you all in your suggestions and support. I really like my new doctor. They gave them the "miracle shot" and we will remain on the xeljanz until the 2 month mark. I was asked to call and let them know how I am feeling next Tuesday and they did blood work.

    I'm still at the end of my rope, however, there may be some light at the end of the tunnel....I just wish we would find the right cocktail of medications that help.

    Auriliabert, thank you! I had just started my green tea's and cutting out sugars. I will try some if the other teas Mint and other suggestions.

    Caffeine bad, sugar bad, sodas bad, alcohol bad.....I have already changed my diet, no more crap...been doing these since diagnosed. But yours, going to try some others suggested by a friend. I will share those that I find that work.

    If it were not for my husband and children I would have given up already, just like you sabgif.

    I am so glad I stumbled onto this site. Thank you all and I am here to help and support.

    Honestly, thank you, thank you, thank you!!!!!

  • I hear chagga(spelling?) is supposed to help with disease activity, primarily inflammation.

  • I feel for you. Yes I have been there as well. So frustrating. Take a deep breath, don't be hard on yourself. Ice helps me a lot. And rest rest rest. I know it's hard to do when all you want is to feel "normal" again. I myself have been on humira enbrel and orencia....ugghhhh. Check out livephytozon. This is an all natural supplement that has helped me TREMENDOUSLY, especially with the fatigue as well as my pain becoming tolerable. You can take with your other meds ok. I was literrally so depressed and my friend turned me on to this. It won't break the bank either :) I started noticing I "just felt better" within a week ;) wishing you much love and light and strength on your healing. You got this!!!! I also have info on a more in depth "cleanse" and stuff that worked wonders too!

  • Well some news and could be part of why I'm in such a bad flare....steroid injection not much help...however the blood test came back with high liver enzymes. Second blood test tomorrow. I'm hoping that they figure out something and soon. I can hardly walk and my hands hurt so bad...also my knees hurt which is new, the swelling is extreme. I just want to feel better, I am so sick of the pain. All I can do is cry.

    Thank you all for your support and tips....nobody around me seems to,get it and this makes me cry more.

  • I'm so sorry for your pain and suffering. I have been through 5 Rhuemies in the past 2 years. Why? Because if they are not going to wrk for you fire them! They are there to help YOU! If they can not or will not find one that will. I drove 6 hours yesterday to go to a new rheumatologist when after mine had retired and her replacement dismissed my disease and pain. So I went to find someone who would. After two failed meetings at a closer hospital I made the drive to one in another state. If your anywhere close to NH. Dartmouth and Hitchcock seems good, but heads up: they don't believe that pain medicine should be involved with a disease that produces......pain. So try all avenues and never give up! Be the sqweeky wheel, only then will you get oil!

  • Don't give up!! I've had RA for over 3 years now and I too am not controlled!! We have to believe that our time to be in remission is just around the corner!!

    Take care


  • Have you tried a ginger supplement? Turmeric is helpful as well. I hope you can find some relief. For immediate relief I use ice packs. My hubby is great at making sure I have my packs when I'm in a flare!

  • Don't give up! You will find what works! Diagnosed 22 years ago myself and have been there many times! Nobody really understands our pain, even our doctors, unless they have RA, too! Try exercise when you feel like it, swimming is great since no impact on joints. For those that have replied about biologics and insurance problems, they all have copayment assistance programs! Talk to your doctor or look up online and apply. The Rituxan infusion I take is $15,000 per infusion, but their co-pay program pays all of my deductible and co-insurance ($7,500) with me only having to pay $5! Not to mention that meets my out-of-pocket so the rest of the year insurance pays 100% of everything else! Medrol dosepaks are great to have on hand for flares. Talk to your MD. BEST WISHES!

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