RA newbie

[DRunnerchick]

I was diagnosed with seronegative RA four weeks ago. I had severe fatigue preceding the joint pain (started in my feet- 9/15). All of my initial work up was negative except ongoing low ferritin. Iron infusion in April...the usual story of progressive joint involvement/pain, 5 month wait for a rheumy appointment etc. Prior to this devilish development I was a runner since he Reagan administration and was a reformed triple 'type A'. That was then, now is another story! The MTX wipes me out for a day even with folic acid, starchy meal when I take it and super hydrating before and after. I have not been sick before other than anemia. No surgeries/hospitalizations other than childbirth either. I hate being a patient, not running...the fatigue is like Alice down the rabbit hole where everything is upside down and there's no easy way out.

So, enough of my complaining! Maybe someone can shed some light on whether there are things that worked better for them to cope and if there is anyone that was able to return to running with RA. When I asked the rheumy if I could run, she said,"let your body be your guide". Well, that is the wrong thing to tell someone who used to run 100 mile weeks. I do feel like I have great doctors so far( PCP, hematologist, rheumatologist, PT) for the journey. Thanks, Dee

[popsmith1874]

Well girl I'm seronegative RA and OA since 2014 was like yourself until last month when after failing 3 dmards I'm now on Bisomar Benepali and alongside mtx changed my life, I'm at fitness classes most days, gym other days, Aqua aerobics 2 a week and also doing body step which is high tempo, so you can do it girl believe I did and I'm pushing it now because I never thought I'd get to where I am now xxx

[DRunnerchick in reply to popsmith1874]

Thanks for the info and your encouraging words. The rheumy did suggest swimming. That may be an option down the road as I used to swim and surf. Right now my shoulder hasn't recovered ROM for any overhead strokes...yet.

[Beaches2]

4 weeks is very early days in the world of RA. Most of the drugs take a couple of months to "get going" and the side effects, nausea etc generally lessen once your body gets used to them. Methotrexate used to wipe me out for 2 days, i remember feeling fed up that as the nausea subsided it was nearly time to take the next dose.......all that settled after a few months on the drug and now I feel no different after taking it. I too am now on a biologic which is working well. I play sport and get on with my life. I've never been a runner, but if I was I would be able to run now ( hope that makes sense) Your rheumy is right, you will know when a drug is working for you and what you can manage. In the mean time try and do some gentle exercise each day to maintain your strength and fitness as best you can.

[DRunnerchick in reply to Beaches2]

Beaches2,

I thank you! I'm hoping the side effects settle down and the therapeutic level moves up in time. I take the MTX Friday night so by Monday my pain and stiffness is so much better but it creeps back by Thursday. I had never taken Prednisone until last month and am now thinking the initial 10 days of that is really what made the noticeable improvement. I guess patience is a virtue and this is a marathon, not a sprint. I do modified yoga and stretching, walk and work with bands for strength when I'm up to it. Honestly, I felt like I could take this on like every other challenge but I feel a bit like my life is a trainwreck.

[Beaches2 in reply to DRunnerchick]

I felt like that too at the start. I had what they call an explosive onset. One day I was fine and the next day I struggled to move with swollen, painful joints. I became very anaemic and had to take 3 months off work....it was just awful. Steroid jabs just about kept me on my feet while we tried to find a drug to work. Like yourself, I tried to keep up with a daily walk, used bands and stretched as much as I could. Later I added in swimming and just did breastroke and some exercises in the water, treading water, walking in the pool etc, that might be an option for you when you feel a bit better? Be kind and patient with yourself. it's very positive that you are feeling some benefit from methotrexate already, it did nothing on its own for me, we had to add another Dmard and a biologic to finally calm things down.

[DRunnerchick]

When the frozen shoulder hit in March, I had only 10%ROM so I got a shot of Kenalog and felt so much better overall. I had my shoulder manipulated in therapy right away and made a drastic improvement then. Worked hard and got it to almost full range. It just doesn't stay that way. It seems like the magic juju worked for about six weeks. Mind you, this was all before I actually was diagnosed. I never felt old until this cruel mistress RA moved in! I have a daughter with CRPS so I have watched her battle with chronic pain and we very often compensate for each other. I have set goals for charity races in Oct, Nov and Dec, ranging from a 1k to 5k- just short ones. I'll walk them if I have to but I don't want to concede this fight so early in the battle.

I will take your advice about being kind and patient with myself. I very often give others that benefit without extending it to myself at all.

[Beaches2 in reply to DRunnerchick]

That sounds positive but make sure you don't set yourself unrealistic or unachievable goals, or if you do but don't manage them, don't beat yourself up about it. This is a nasty condition and very hard to come to terms with at the start. I dont think its giving in to allow yourself time ......time to adjust to the condition,time to get used to all the drugs,appointments,blood tests etc.....and of course time for the drugs to do their stuff.

Good luck and I'm sure before long you will be posting on here about how much better you feel.

[DRunnerchick in reply to Beaches2]

I feel like you read my mind and knew just what I needed to hear! I'm such an independant person and have such high expectations for myself. One of the hardest things for me to learn is when to know my limits and take the help, and when to stop in the name of self-care: The unpredictability of sx doesn't help, I guess in time I will learn better ways to manage and hopefully the meds will balance and do their thing too.

[Beaches2 in reply to DRunnerchick]

It's not so much that I can read your mind, more that I have been through the same thing. Tennis is my sport, I asked early on if I might be able to play again and was told "we will try and get you back to it". I was so relieved, I thought they might shake their heads and say it was out of the question, especially since my shoulders were worst affected. At the start I couldn't even lift the racket up let alone try and swing it. I missed playing for 18 months.....I was gutted. In April this year, being so much better, I tentatively had a go at playing and now am back to playing 2 or 3 times a week. There is always a feeling that the drug may stop working but for now I'm enjoying every bit of it.

Stay positive and believe that you will get back to what you love doing.

[ilovemyhubby]

I was dx in Oct of 2015 after neg blood test at least a year prior. I could have written your post! I've read so many of these but none have been so close to mine. I started on prednisone 5mg daily, along with MTX injections 0.4ml weekly (I take injections because of abdominal issues). Forgot to mention that in May of 2015 I had a ulcer perforate that nearly killed me. Anyway, eventually moved up to 10mg of prednisone and 0.6ml of MTX, along with Humira. It worked for a couple of months. Then on to 15mg of prednisone, 1ml of MTX and Enbrel. Had to stop the Enbrel, however, because I was getting one infection after another. I haven't spoken with my rheumy but haven't restarted it. Appointment on Oct12. It's like Ft. Knox getting a call in.

[DRunnerchick in reply to ilovemyhubby]

Thanks for your input and info. My side effects were less this time (wk5) and I was delusional to think I could spend half a day out (like my pre-RA days). I spent the entire afternoon sleeping. I read these posts and realize that gratitude for the day and any progress is what it's all about. I actually chose to decline a social event in favor of self-care. Change is constant and flexiblity is a must, as I see from your example. I guess I won the lottery when I got my rheumy, as he called to check on me after the third week of MTX, and when I had my labs done Friday, he messaged me about the results within a few hours. I really feel fortunate with my team (PCP, hematologist, rheumy, PT and Pharmacist). I hope Ft. Knox eases up a bit for you!

[Niknee]

Hi. I'm in a group on Facebook called Living With Rheumatoid Arthritis and there is someone who runs 4 or 5 miles daily on the site. Maybe you can join and talk with her.

[DRunnerchick in reply to Niknee]

I will check that out. Thanks for the info. I am hopeful that running again is in my future. In the meantime I work on regaining strength as much as I can while I adjust to all this. It seems like I've lost so much muscle mass and conditioning. I've lost quite a bit of weight (about 7% in two months) and it seems like most of it is muscle 😕

[Amy_Lee]

Hi DRunnerchick,

Be kind and good to your body. Give the drugs sometimes to work on you, you will be able to do what you want to do again one day in future. However, I am afraid it will be very hard when you are only a few weeks in RA. This is a long battle for us all.

I have just posted a link on my exercises recovery, I hope it helps to give you some tips to set your goal again in the future.

healthunlocked.com/ra-warri...

[DRunnerchick in reply to Amy_Lee]

Amy, I went to your link and I am inspired by your journey. I love your emphasis on using what you have in front of you to exercise. That makes it easier to work in little routines even if they're short. I do a lot of work with bands too. I am grateful for all the cheers and wisdom from the RA Warriors on this site😀

[Amy_Lee in reply to DRunnerchick]

I was in great pain so I could not go round to find things and places to work on my joints. What I got and whenever possible, I kept moving my joints, that would make it easier to continue as much exercise as possible. I promised to write what I did so a link will be convenience for me to just copy and paste it, I need not repeatedly write the same thing. With photo to track my recovery would be a better way to explain my progress too.

I have 2 very good and informative videos in my page if you are interested to go through them. I found most of my answers from watching the videos too.

In my page you can also see my suffering those days and my determination to get back to my normal life again. The whole purpose is to inspire new RA patients to look forward, we can live a normal again if we work closely with our rheumy.

[Jmiller46]

I used to work. And I mean WORK lol. I was a CNA/CMA for 20+ years. As a CNA you walk right about 25 miles per day. You lift thousands of lbs a day (sometimes the subject you are lifting is also beating the tar out of you ) and there is bending, and running, and just about everything else you can imagine. I did this 40-80 hours a week. Now I am lucky to drag through a 5 hour day 4 times a week as a home health aid. My most strenuous task is picking the lady's 4lb dog up and setting him in her lap. And I find it exhausting. I hurt all over. I am so tired I can barely move, but still don't sleep well.

I read all of the meds you folks get started on right away and feel like I have dud for a doc. I was diagnosed in January of 2016. Couldn't get my first appointment with a rheumatologist until the end of April. I had my family doc give me something for pain in the meantime...he started me on 1000mg of naproxen a day. At my first rheumatologist (I call him Dr. Fancy Pants) appointment there was a mix up with my bloodwork. They sent the wrong ones. So he said come back in two months with the right bloodwork and don't take the naproxen for two weeks before the blood work. Did that. Went back. Had an infected toe, so no meds. Had to get antibiotics from the family doc, take those, call and tell Dr. Fancy Pants it was cleared up and then started on methotrexate. He says it is working. I highly disagree. My sed rate with just the naproxen was 12. Without it for the two weeks it jumped up to 48. The last labs showed the sed rate was down to 11. That is with the methotrexate and the naproxen. SO really not much better than with just the naproxen. I told him that the pain is worse. I am so dizzy I stumble around like the town wino. I am constantly queasy. Throwing up quite often. To me the cons are far outweighing the pros. His solution? He cut the naproxen in half. No other pain meds. SO...I have stopped the naproxen all together. It is pretty darned miserable. I am hoping that after going through all of this for 2 1/2 months I will be right and it isn't working nearly as well as he has it in his mind that it is and he will add something or change anything to get this ball rolling. There is no doubt that the diagnosis is correct. My RA factor was 559.6. High normal is 13.9 so that is not the problem. Sorry about the super long rant but it is just SO frustrating!