I woke up one day with RA

Hi, I am new to this forum and have recently been diagnosed with RA. I’ve have spent the last three months in the most excruciating pain. I went from a normal person who could walk to a person who could barley walk. The muscles and bones in my legs hurt so bad all I could do is lay in bed and cry, it was terrible. I do feel a little better now, but I’m on prednisone and unfortunately I already have to be weaned off of it because I can’t sleep. I am not looking forward to going back to all the pain, but I am trying to take it one day at a time. I’m working with a homeopathic doctor and trying to deal with some of this through diet and vitamins, we will see how that works. Anyways, I would love any advice or if you have taken something other then prednisone that has worked I would like to know what you’ve taken.
Thanks-Jeannette

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (17)
  • suann
    2 years ago

    Hi Jeanette, welcome to the RA site, we have a lot of information going on here..I know this wont help your pain but it gets better and worse, its a vicious cycle of ups and downs..If you can get on something now that will put it in remission, u may get a win/win situation..I have had ra since childhood, Im at what they call the end stages where meds no longer help me, I do take predisone, 10 mg. it helps a little..Stay on top of it and if for any reason u dont care for your rhummy doctor, look for another..some will treat all their patients the same and treat them from a book, a good doctor will treat u as an individual and listen to what u say….Take care of your self and listen to ur body, rest when u need it..

  • jeannettevance1 author
    2 years ago

    Thank you so much for your kind words. It does seem like a vicious cycle of up and down. Every day seems different. I’m down to 5 mg of prednisone and starting a new med this week. My pain is now a 2-3 on most days, it has not gone away altogether. Have you ever had times that the pain went away altogether for awhile? Have you found that diet helps at all? Wow, you have probably been through a lot since you’ve had it since childhood. It’s a little frustrating because I think most people don’t realize how bad RA is or they think you can cure it by diet and I have not read any evidence that you can do that. What do you think?

  • Patricia
    2 years ago

    I, too, was hit with the same sudden on-set of pain and other symptoms; I could hardly move and getting out of bed was a 10-min torture in the mornings. I went to my primary care dr. and he immediately thought “RA”…He then ordered a whole bunch of tests plus x-rays of my hands. Then he got me an appointment with an excellent Rheumatologist. That Rheum. strongly believes Prednisone is a “bandaid” only and nothing to stay on for long. I was on a full dose of it for 6 weeks & then did the tapering off thing. He put me on MTX (Methotrexate) and Hydroxycholoroquine…That has worked for me since 2012. I am usually in clinical remission; had a flare last year, but it was short lived..only took Predisone for 5 days to help me over that flare. If you are not seeing a Rheumatologist, I would strongly suggest finding a good one!

  • jeannettevance1 author
    2 years ago

    Hi, thanks for writing me. I am tapering off Prednisone and starting Hydroxycholoroquine. Long word!! I still have some pain everyday but it’s not bad like it was in the beginning. I’m hoping with this new drug that I will go in remission. My Rheumatologist is great also, but he is leaving, so I hope my new one will be just as good. My regular Doctor was not good at first. I don’t think he believed me, but he finally took it seriously. Have you found that diet helps at all?

  • findoutforyourself
    2 years ago

    MSM and Tumeric – run to the healthfood store. I couple with Plaquenil.

  • Novemba
    2 years ago

    I too literally woke up with RA my GP said it was carpal tunnel syndrome and he’d refer me to the local hospital and that was it, To cut a long story short it was almost 3 months before I saw a rheumatologist and by then I was in so much pain I felt suicidal I couldn’t walk or use my hands at all, I was given a steroid injection and Prednisone tablets and it was as if a magic wand had been waved over me within 3 days the pain had gone, I was given Methatrexate but because, I was told, it can take up to 15 weeks to be fully effective I carried on taking Prednisone at a lower dosage, That was 8 months ago, I’m taking 25 mg as one dose weekly but have found that if I don’t take the prednisone for a few days the pain starts coming back plus i’m really breathless with even slight exertion and always tired has any one else had the same thing, should I ask about an alternative to Methatrexate, what do others take because iv’e no idea about alternative medication and would appreciate any advice

  • Richard Faust moderator
    2 years ago

    Hi Novemba. Sorry to hear that you had these difficulties getting a diagnosis. Unfortunately, this can be common with RA.

    Please know that the emotional roller coaster you were on following the diagnosis can be normal and that there are sources, such as this site and our Facebook page https://www.facebook.com/RheumatoidArthritisDotNet/, where you can go for support. Sometimes the emotional aspects can take a back seat the physical, but it is extremely important. This article from our editorial team looks at these issues:

    https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems/.

    If you believe that the methotrexate is not effectively controlling your RA you may want to ask your rheumatologist about alternatives. In this article one of our contributors writes about his doctor who is not willing to accept the RA not being under control and thus continues looking for the best treatment for him: https://rheumatoidarthritis.net/living/the-good-doctor/.

    Also, thought you might be interested in this article from our editorial team on treatment options, with links to more information: https://rheumatoidarthritis.net/treatment/.

    Concerning alternative therapies, this article from our editorial team looks at alternative options, also with links to more detailed information: https://rheumatoidarthritis.net/alternatives-therapies/.

    Again, please know that you are always welcome here for information and support. Wishing you the best and keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  • jeannettevance1 author
    2 years ago

    Hi, thank you so much for responding to my post. It is so nice to talk to people that have been through the same thing. It took 3 months for me to see a Rheumatologist also. My regular Doctor did not take me seriously at first. It’s crazy that your in so much pain and you can’t get your doctor to take you seriously. I’m glad the prednisone helped you. It helped me also. I’m still on 7,5mg everyday. I also am taking Methatrexate. On the homeopathic route I take a really good protein drink every day along with a healthy fat and I’m suppose to be following the Paleo diet. But I keep cheating!! LOL. Epson salt baths help tremendously!! I am doing better, the pain is no longer a 8 or a 9. I’m a 1-3 most days now. I feel a lot stronger though, so that’s good. I know exactly how you felt suicidal, I did too on a couple days also. I had no idea RA could be this painful, it was terrible. I also still feel tired or get tired easy. I have to pace myself. I’m hoping and praying it will keep getting better!!

  • Lirael
    2 years ago

    Hi Jeanette, I also woke up one day last year with sudden onset of extreme stiffness, malaise and arms I could not raise above shoulder height. After visiting 3 GPS who were mystified because my blood tests were not conclusive, I finally saw a rheumatologist who diagnosed RA/psoriatic arthritis and immediately started me on prednisone 10mg for 1 week followed by 2 weeks of prednisone 5mg plus commencing Plaquenil 200mg morning and night. About 10 days after finishing the prednisone, 1 shoulder relapsed so I started back on prednisone which was now 10mg the first week followed by 7.5mg for 2 weeks. I also commenced Arava (leflunomide) 10 mg per day. No more shoulder pain. By now, I had developed lumpy PIP joints on toes 2, 3 and 4 on both feet and my big toe and second toe on my right foot are numb. This happened before Arava. After 2 months, Arava was increased to 20mg. Initially there was GI upset but this has passed. I have lost some hair but nowhere near having noticeable bald patches. The burning pain in hands has gone, just swollen stiff finger joints. My biggest problem at present is lower back pain and hip pain when lying on my side at night in bed. I find NSAIDs the best pain relievers while waiting for DMARDs to take full effect e.g Voltaren, Mobic, however they worsen my asthma so am trying to live without them – not fun. Panadiene Extra (paracetamol 500mg + codeine 15mg) x 2 is what I sometimes take on going to bed and during the night to be able to sleep. I also sometimes take Doxylamine Succinate, 1/2 of a 25mg tablet with the panadiene extra. It’s a potent antihistamine marketed as a sleeping tablet. It is also a component of Mersyndol. I’ve been on Curcumin and fish oil since the start and imagine it’s helping. I have monthly blood tests to check liver and kidney function, blood count and ESR. All these show if my body is coping with the drugs and whether they are making a difference. I can still feel the inflammation with sharp pains in knees and hips. I’ve got referrals to see an exercise physiologist, physiotherapist and dietitian and plan to also see a podiatrist. We are so fortunate to have medicine available that slows the progression of this disease. When I was nursing in the 1980s, I saw elderly people with RA with debilitating deformities who had no access to the drugs we now take for granted. Regular use of prednisone is not ideal, especially regarding the development of osteoporosis. It also doesn’t slow the progression of the disease. My rheumatologist didn’t put me on methotrexate because I have developed nodules on my fingers and toes, which can be worsened by this drug. The next step for me would be biologics which my rheumatologist is hesitant about because of the higher risk of infections which present a problem for my asthma and UTIs. At 56 years old and recently retired, sustaining a decent quality of life is important for me so that I can travel, and one day enjoy playing with grandchildren. For me, Arava has been a game changer. I haven’t had to take prednisone and don’t need to ask my husband to help me get dressed! I hope this information is helpful.

  • StillFlaring
    2 years ago

    Hi jeannettevance1, welcome to the site. I hope you are having a good day today. With RA, you may find that you do more living day-to-day. Plans will be disrupted or have to be cancelled, due to you not feeling up to it. There are many good articles on here and you can find people who can understand what you are going through.
    I’ve been experimenting with essential oils lately and have had enough good results that I’m going deeper into it. Good luck and wishing you a good day.

  • Tich
    2 years ago

    Hello Jeannette, sounds like you would rather not take drugs with side effects. Unfortunately most rheumatology medications do have side effects, and some are rather unpleasant. I was diagnosed in 2006 and we’ll, you can read my story. Radon is working well for me and I wish I had started it 40 years ago. It is easy to take, just sit in a comfortable chair an breathe normally. Read a book or listen to your music. Check the info given at radonmine.com. My docs are amazed at the improvements I’ve made. I’ve been able to stop prednisone, methotrexate and hope to stop biologics as they give me bad eczema. Good luck and take care.

  • Eebtool
    2 years ago

    Jannette,
    I do see your point as try as many options as possible to find first pain relief and second to taim so to speak the RA.
    I also glad that you will be seeing a rheumatologist as getting a plan in action as soon as possible is one of the best first steps of treatment. Now finding the plan that works for you can seem to take time, so stick to it and you should see results.
    In the meantime I found this article on the rheumatoidarthritis.net web site, it is somewhere to start with your research on medication.

    https://rheumatoidarthritis.net/living/using-evidence-based-medicine-make-decisions-treating-ra/

    I myself am being treated with Enbrel and methotrexate and am having very nice results.
    Best of luck, Edward.

  • jeannettevance1 author
    2 years ago

    Thank you so much Edward, I really appreciate it. I will talk to my doctor about those two prescription.

    Jeannette

  • Dave
    2 years ago

    Sorry to hear about your diagnosis (and your pain!) Most of us here have been where you are and it is not fun. The prednisone is a stop-gap to get you relief from the pain until something else can be put into place to deal with the cause of the pain. I’ll cut right to the chase here and won’t beat around the bush. PLEASE see a rheumatologist, there is too much at stake at this point in time. Diet and vitamins have a place in the treatment of RA but if your pain is at the level you describe you are gonna need more than that. Good luck, Dave

  • jeannettevance1 author
    2 years ago

    Dave, no problem at all for giving me advice. I think your concerns were legit. It didn’t bother me at all. It’s so nice to talk to other people that have been dealing with RA. It makes a big difference.

    Take care,

    Jeannette

  • Dave
    2 years ago

    I’m sorry that I misunderstood you, my response was based on a real concern for your well being. I am glad that you are covering all bases. I have a niece who is trying to control her RA with “natural” methods only and I am concerned for her. I am aware that the approach works for some people but I believe that it needs to be used with caution. I have seen the long term result of medically untreated RA and they are ugly. I don’t want to go there. Again, I apologize for my misunderstanding. I wish you well on your journey and hope that you find some relief soon. Dave

  • jeannettevance1 author
    2 years ago

    Dave,

    Thank you so much for your response. I can assure you that I am going to the regular doctors and that I have a rheumatologist. I just meant that I was also doing a diet for inflammation and taking vitamins to build up my immune system. I’m a firm believer in doing both and that just going one way is not the answer for me. I appreciate your concern!!
    Jeannette

  • Poll