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New to this disease

It started 4 years ago after a very acrimonious separation and finally divorce, I woke up one day and my knee had so much pain I could not walk. I went to the ER and they could not find the problem. Several months later my right foot swelled to the point I could not walk, I went to the Urgent care they did x-rays and said nothing wrong. My foot was red, swollen and the pain was off the scale. Again, months later my right hand swelled and became red, angry and extremely painful. X-rays showed nothing. The Dr. did labs and I had a RF of 580. My PCP has arranged for me to see a rheumatologist this month (after a 4 month wait) In between times I have been to urgent care 3 times with pain in my shoulder, my neck and my knees. I am so tired all the time and if I do any amount of manual labor (like gardening) I suffer for days afterwards. I work full time and limped into work this a.m. like an old, old woman. Does this get any better with treatment???

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Comments

  • Carla Kienast
    2 years ago

    Jessie: As you can see, treatment does make things better for most of us. Everyone is different and your treatment plan may evolve over time, so hang in there. I will tell you that RA won’t get better without treatment, so you’re definitely on the right path seeing your doctor. Wishing you relief soon!

  • jessie author
    2 years ago

    has anyone out there had severe sore throat cough and swollen uvula with yellow area on it, fever and feeling wobbly??? Im taking methotrexate

  • Kathy P.
    2 years ago

    Jessie, most who get diagnosed with RA are overwhelmed at first. You find out you have an actual disease that won’t be resolved and you’ll live with for the rest of your life. But–treatments now make a big difference. You don’t cure it; you control it. It will take trial and error, but it will get better. What works for one person, may or may not work for you.

    I’ve had RA since at least my early 20’s (doctors thought I’d been snake bitten at first), but wasn’t ‘officially’ diagnosed until my mid-50’s. Other than an elevated sed rate, I never had any positive blood tests, only massive swelling, pain and redness. It used to be I’d have a big flare now and then that would last for a few months, but suddenly it was all the time, involving a lot of joints over months and kept getting worse, no matter what my GP tried.

    I loved Plaquenil. It was the first time I’d been pretty much pain-free in years, but I developed a sensitivity to it. Methotrexate wasn’t bad and helped considerably; the injections didn’t hurt and worked better than the oral with less nausea in my case. Other DMARDs and biologicals have had success of various degrees by keeping the disease and pain under control most of the time. A lot of people do very well with steroids and NSAIDs to control pain while taking their maintenance meds. Keep notes and talk frankly with your doctor about your concerns as well as what’s working.

    Alternative treatments such as chiropractic, hypnosis, massage, diet modification, exercise practices (yoga, tai-chi, swimming are popular), acupuncture, can usually help to some degree. TENs machines, salves and cold laser treatments are others to explore.

    It will take time to find your own set of protocols that work for you, but it will happen. Hang in there. It does get better.

  • kohrimbo
    2 years ago

    Although it is sad, it is somehow good to hear stories so that I know it is not “Just me”. I had a similar story starting at age 56 and was not diagnosed until almost a year later. It finally “dawned” on my doctors that after having surgery for carpel tunnel that did not work that something else was wrong. I am on my third biologic and just had my first infusion (Simponi Aria) yesterday. As I sat there, I kept thinking do I really have RA, am I just getting old… I know down deep I do however, your own mind (and getting older) does cause you to question and get depressed.

  • Mary Mann
    2 years ago

    Does it get any better? yes it does for most people.
    My RA started with severe pain in my shoulder, feet, hands and wrists. I ended up in the ER because I couldn’t get in to see my primary. I was sent to a rheumatologist. I was lucky to be seen within two weeks. After testing, My RA Doc sat me down and told me I had RA.
    It was a relief to have a name to this thing that was driving me crazy. So it was better with a name. Next, the drugs. Some people find relief with the biologics. They didn’t work well for me. Methotrexate injections help me. I also take it with plaquenil. Some find relief with elimination diets, some with yoga or swimming. Having RA is not an easy road. However, there are many helps both with people and with management. I wish you luck. It will take trial and error but you will find the path that will work for you.

  • jessie author
    2 years ago

    Well I saw my rheumatologist for the first time today, she has ordered blood tests, xrays and wants me to start Methotrexate weekly 0.6ml injections, with Folic acid Diclofenac and Omeprazole daily. The thing that most scares me is the weight gain and hair loss (stupid I know!) I am an RN and should react better than this,I am so used to being on the other end of the diagnosis. any comments on Methotrexate

  • jessie author
    2 years ago

    Hi Piplover, I am sorry you have gone through so much this disease is terrible when we have all been so active. I am on my fourth week of methotrexate and having really sore throats and flu like symptoms. I got my lab results back after 2 weeks on the drug and already my platelets have gone up along with my rbbc and glucose. I am seriously thinking about stopping it because I actually feel worse than i did (minus the pain) before I started it. I have started taking aspirin to try and combat the increase in platelets. I take floic acid and omeprazole. So I have gone from no drugs to four. I am an RN and am concerned about stroke and heart problems. I am short of breath but cannot make up my mind if its the humidity or the drug ,,,, oh and last of all my Blood pressure is raised now so i have to take antihypertensives, I always had low BP. Anyway thanks for your good wishes and take care.

  • Piplover
    2 years ago

    Jessie, I was diagnosed 4 years, at the same time I was dealing with my father dying. It was pretty stressful, but I was so relieved to finally have an answer. The fatigue was almost worse than the pain. I, too, was worried about methotrexate. You hear so many horror stories and words like “hair loss” are never good. I stocked up on ginger tea and told my hair dresser what was going on and was trying to brace myself for the worse. The methotrexate itself makes me feel rather yucky, so they started me on a rescue drug to help reduce the side effects. For the most part, I just feel kind of sick the first few days after taking it, but every now and then I get sores in my mouth from it. I was on planquil for a few years, but I developed bad reactions to it and had to stop. Now I’m about to start infusions. The good news is, after about a month on the methotrexate my energy levels started to come back up. I don’t think I’ll ever be back to having a lot of energy, but now at least I can clean my house and do the dishes. It’s scary, having this disease, especially when you know there is no cure. But we are stronger than we think we are, and taking things one day at a time really helps. I hope you’re feeling better soon.

  • jessie author
    2 years ago

    I have my first appt with my rheumatologist on Tues 27th and Oh boy am I looking forward to it.I am hoping she will be able to take away some of the pain and fatigue

  • Richard Faust moderator
    2 years ago

    Hi Jessie, First let me say that I am sorry that you are having these difficulties, but glad that you have come to a place you can get information and support. Things can get better with treatment.

    Treatments have changed dramatically in just a short time. This article from one of our contributors, Kelly Mack (full disclosure – I’m her husband), who was diagnosed very young, looks at the evolution of treatments: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/.

    This article from our editorial team gives an overview of many of the various treatment options: https://rheumatoidarthritis.net/treatment/.

    You mention that you have a scheduled rheumatology appointment, so you may also be interested in this article offering up thoughts on things to consider for meeting a new rheumatologist: https://rheumatoidarthritis.net/treatment/.

    Hope this information proves helpful and know that you are always welcome here. Please keep us posted on how things go. Best, Richard (RheumatoidArthritis.net Team)

  • SusanHU
    2 years ago

    Please keep us posted on your appointment jessie – we’ll be thinking of you! – Susan (RheumatoidArthritis.net Team Member)

  • jessie author
    2 years ago

    No none of my other markers are positive I would imagine that when I go for my first appt next week they will do more labs , I just know since I wrote my first post I have again had a hugely swollen foot and oapin off the scale that lasts for approx 4 days. The fatigue never does away

  • Airlion
    2 years ago

    I have a very similar story. I am curious. Did any other inflammation markers in your blood test come back positive?

  • jessie author
    2 years ago

    I have been told that shock or stress can trigger this but I would like to know if anyone else has similar experiences

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