Stiffness/pain question: So I'm new to RA (December 1st... - NRAS

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Stiffness/pain question

Jesscap
Jesscap
27 Replies

So I'm new to RA (December 1st diagnosis), I took my 1st dose of methotrexate this past Saturday evening (luckily I was just a little tired, and I think it gave me a panic attack because I was absolutely terrified to take it. I felt like I was being hugged very tightly when trying to to take a deep breath, but my doctor insists that's not related to the medicine, he did offer to check me out if it would make me feel better, I told him I would see how I feel towards the end of the week). Anyway, I believe we are catching my diagnosis fairly early, I started having symptoms show up in September, and was diagnosed fairly quickly. I am lucky that I don't have pain all day, and it's not on both sides of my body, and what I am learning quickly is that RA is different for everyone. With that said, it seems I have pain in random parts of my feet every day (only in the morning) and as soon as I massage them, the pain goes away and I'm able to function normally. Is it unusual that one day it will be in my middle toes on the left foot, and the next day it will be my right ankle? Does the pain move like this often? I just never know what to expect when I wake up because they also don't hurt until I get out of bed and start walking. Any opinions?

27 Replies
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loppyloo12

Unfortunately it's part and parcel and never two days are the same you need to keep warm try bed socks xx

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Jesscap
Jesscap
in reply to loppyloo12

I will definitely try sleeping with socks tonight, thank you!

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loppyloo12
loppyloo12
in reply to Jesscap

It's the cold that's the killer and you will find that pain killers Wont work when u cold either Hun I always have them with a hot coffee or tea I know that's not right but they work better when warm also ask your doctor for movelate cream or gel it's great stuff and only cream that's for arthritis pain better then any over counter creams let us know how u get on xx

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Jesscap
Jesscap
in reply to loppyloo12

I have used my heating pad on my feet and they do always feel better so that makes sense! Thank you again, I will let you know how it goes!

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loppyloo12

Take care xx

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Jesscap
Jesscap
in reply to loppyloo12

Your sock idea worked, much less pain in my feet this morning. Thank you thank you thank you!

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loppyloo12
loppyloo12
in reply to Jesscap

Your welcome works same for hands to my love xx

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Parker16-

Yes as the others say it’s different every day. I became a bit like you and could cry at a drop of a hat too, which is not me. I have been on them several months but they have not done anything so when I go back to Hospital I will be seeing what other choices I have. The cold is not helping me either.Good luck for the future and keep us updated. Be positive although it’s hard at times . Pam

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Jesscap
Jesscap
in reply to Parker16-

Thank you. The positive part is the hardest, but I am trying. We put up a gratitude jar where I have to write positive things that happened each day and put it in the jar, this way when I am feeling down, I will have something to cheer me up.

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loppyloo12
loppyloo12
in reply to Jesscap

Hunny it's a battering illness but you must be strong look on the bright side I got told for years it was my weight that was causing my legs to hurt it was only when I moved doctors and told them it's affecting my work they did my inflammation markers they were ment to be between 4 to 14 at the time back in 2014 mins went to 358 that's when I got treatment there is always a plus side Hun at least u know what's causing pain now I've privately messaged u Hun xx

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stbernhard

Hello Jesscap, sorry you had to join the club of people living with RA. I found that the most important thing for me was to know as much as possible about RA and how I can take control back over my life. Apart from the lovely people on this forum, a very good source of information is the NRAS website. They also have a phone help desk staffed by friendly, knowledgeable and understanding people who will go out of their way to help you. All the very best and sty in touch.

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Jesscap
Jesscap
in reply to stbernhard

Thank you, I have been doing a lot of reading, and trying to find out as much as I can, I know that stress is a trigger for my flare ups, so now I am working on ways of staying calm. Thank you for your tip!

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Gnarli

Hi Jesscap and welcome to the club you never wanted to join. It's really early days for you and you will probably feel overwhelmed. I know that, this time last year, I did. Try to be kind to yourself, follow what your rheumy says and stay away from Dr Google. That website will give you the heebie-jeebies and you don't need that. If you need a friendly ear you've found a forum full of lovely, informed and sympathetic people who know what it's like. You just need to remember that those who post here will be those who are suffering, newbies like yourself and a fabulous few who want to help by sharing information. Everyone else is far too busy getting on with their lives. Hugs

Jan

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Jesscap
Jesscap
in reply to Gnarli

Thank you Jan. I did have the fortunate experience last week of talking to some wonderful people who weren't suffering and have had this for quite some time, it did make things feel a little better.

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phil_54
phil_54
in reply to Gnarli

Hi Gnarli You are absolutely spot on Dr Google really doesnt help, this forum has helped me no end since i joined nearly 3 yrs ago the only people to really understand are fellow sufferers and you will find all the info and understanding you will need to get through the day, I used to google but always left me feeling depressed so stopped doing it i get everything i need from the forum its really great being able to speak to people like yourselves, By the way i have just started Benapali today so that and MTX 2 injections a week so keen to see how that progresses let you know in a couple of months how its going.

Anyone who reads this hope all is well

Cheers

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Gnarli

Awww shucks. Thank you. Two MTX injections a week! You must feel like a pincushion! I really hope the Benepali helps you. I've heard that some get impressive results on it. Please let us know how you get on.

J

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nomoreheels

We all have different experiences, I'm sure you'll be realising! It does sound like a panic reaction to MTX, it does seem to be a problem for some, taking the first doses. If you try to think of them as something that helps rather that whatever it is you're panicky about that may help you. Or do something that keeps your mind occupied when after you'e taken them so you don't allow your mind to think it over. It's not something that bothered me because I did consider them as helpful not harmful.

I've always had annoyingly disobedient feet which don't respond to treatment & pain me in different places daily so we have that in common too! They were the first place RD affected, in fact I was referred for diagnosis from them as I'd no outward sign of any other joints being involved. The blood tests & imaging revealed plenty though. The one thing they respond well to though is my foot warmer, they nearly always settle once they're cozy. If you think you'd like to see if yours would too they happen to have them on the weekly deals in Lidl, they're a really good price at £14.99 too, I've seen them upwards of £25 elsewhere. I posted about them last week healthunlocked.com/nras/pos... In fact I've bought another foot warmers & neck & back warmer (both on as I type this!) just in case mine conk out. The cold is a real problem for me, I get stiffness in my joints & then they hurt.

If your feet continue to be problem you can ask your Rheumy or GP to refer you to Podietry. I see mine regularly because of the damage I've had but hopefully with your pains being limited to mornings it's 'just' related to morning stiffness. It could be the pain is caused by the overnight thickening of the synovial fluid, the inflammation caused, or synovitis. Possibly you only have the pain in the monings because the more you move about the thinner the synovial fluid becomes & with that you have ess stiffness & pain as the day goes on. This explains premierpodiatry.com/advice-...

Hope some of this helps.

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Jesscap
Jesscap
in reply to nomoreheels

Nomoreheels you are always a wealth of information for Me! You posted some lovely things last week in my post to help me with realizing i need to find the positives. I absolutely know the mtx is there to help, I think it was just scary for me as I have never had to be on medicine before. I think as I move forward each week I will begin to be okay. I actually live in the US, but I will look into feet warmers, I did take a tip from someone else last night and slept with socks on, that drastically helped this morning when I woke. The temperature where I live is not helping as today it is supposed to be -16 Celsius with the wind chill. My xrays have shown no damage to my bones or joints, we have really caught it early on. I will keep trying to be positive, thank you again for all of your helpful info.

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nomoreheels
nomoreheels
in reply to Jesscap

Thank you, it's nice to know sometimes we're being helpful! I was the same, never needed more than an NSAID for period pain, oh except for IVF treatment, that was another story, then bam, here take this handful of tablets! It is a huge challenge in the early weeks but it does become the norm pretty quickly, especially when you see results. I know your Rheumy has said about taking the MTX all at once but 6 tablets, hard to swallow, literally. It really helped me back then not having to do that. Nowadays though I have a handful in the morning & a handful at night, I think nothing of it as each are needed & doing their own job. Keeping my joints from screaming, my bones healthy, my heart healthy, my pain from getting too much, then there's the patch too, all have their own place in keeping me going. Diet helps too, I think we covered that, as does exercise a little further down the line.

Apols, I didn't realise you were across the pond. Maybe there's something similar over there?

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Jesscap
Jesscap
in reply to nomoreheels

At least those pills are only once a week for me, they are on top of my daily vitamins (multivitamin 2 pills, probiotic 2 pills, fish oil 2 pills, folic acid 1 pill, birth control pill). These are all good things though. Everything needs an adjustment period when something new happens. I know eventually the blood work every 2 weeks and taking the pills will all become the new norm.

I have been able to exercise, I have been walking on my treadmill a few nights a week. If I feel too achy I take a break. Unfortunately, my eyes have been a little irritated (not due to the RA, I was having an allergic reaction to something), so I haven't been able to wear contacts, but I'm hoping to start yoga up again as soon as I can wear them! My vision is quite bad so practicing without the glasses would be quite comical.

I believe we do have something similar to the foot warmers you sent, I will be doing research on those later today.

I wish we had a forum like this over here as I know some of our things are different, like taking folic acid everyday. But it's so nice to have a place to go to and speak to people who are have the same thing. It doesn't really matter where you are, RD is RD, and although we all have different ways it impacts us, we are all in the same boat. Lucky for us, the internet exists and we can connect with people from all over!

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nomoreheels
nomoreheels
in reply to Jesscap

Please, feel welcomed here. It's interesting learning other country's ways of treatment. What may be helpful though is if you add the US in the 'Country' box on your profile page though? Many things are similar & we all have a common link so it's not really that important where in the world we are or who's forum we join is it? I wonder, & actually as an example, are you prescribed 5mg folic acid or 1mg? It's something I've noticed a few times, that some if not all RD'ers in the US are only prescribed 1mg, is that true of the whole country or is it entirely down to the Rheumy's prescribing preference?

We are very lucky nowadays having the Internet, connecting with others far & wide, I don't now how we ever managed without it!

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Jesscap
Jesscap
in reply to nomoreheels

Ah, I had country set to private! I have fixed that now.

We aren't prescribed folic acid, it's recommended you take it with the methotrexate amd we can purchase it in the store (I buy mine on amazon). I was told to take 1mg daily, I am actually taking 1.2mg as my multivitamin has 400mcg and then I bought 800mcg pills. My doctor said that is completely fine.

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nomoreheels
nomoreheels
in reply to Jesscap

Thanks, it's helpful then we know we're not sharing information that may be different over there.

Ah, you see that's a difference, we're prescribed 5mg, so that will be why you can take it on the same day, it won't reduce the efficacy of the MTX so much. I, like others in the UK, take 5mg,which isn't available to buy so it's prescribed. I take 30mg a week, so quite a lot more than your 8.4mg, though some are prescribed it 7 days as general rule we don't take it the same day as MTX.

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Kathies

Hi, I've had ra for 10 years now and the drugs generally control the pain levels. I can remember the early days, there is lot of excellent advice on here, be kind to yourself is one of the best ones along with the more practical, may I suggest jelly babies, I don't know why, but they cheered me up no end on bad days (and nights), not to excess obviously, be patient and look forward, I do. 😀

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Jesscap
Jesscap
in reply to Kathies

Thank you! Being kind to oneself always seems the hardest!

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lovemydoggy

Mine jumps all over the place. Sometimes it seems it's everywhere. It's progressing. Symptoms began in April and now I have some pain everyday. Rarely agonizing, but has been a few times. It's becoming symmetrical though it didn't start out that way. It got so much better, and at one point I had no pain, I thought it really wasn't anything to concern myself with as blood tests kept coming back normal and no symptoms. Now.....who knows what tomorrow will bring? I'm hoping to get a firm diagnosis and really want to know if I have any joint damage. Like you, most of the time I have little or no pain until I start moving.

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lovemydoggy

I see this is an old post. Wondering how you are now?

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