first time on board-symptoms?? | Arthritis Information

This is my first time here. I've had "RA" for 25 years. Methotrexate seemed to quiet everything down when I started taking it 20 years ago. Nothing else worked.

I'm wondering if anyone finds their symptoms the same as mine. I don't think they're typical - but then, that's why I'm here.

I'm sore all of the time. The "jelling" never goes away.When I sit for more than 10 minutes I am stiff when I stand up.

I can have many days with nothing but being stiff.
Then, like today, I felt a twinge in my left foot this morning and tonight I can hardly get across the room. By tomorrow afternoon my foot will feel just fine.

My arthritis travels to all parts of my body. A hip one day, an elbow the next, a wrist the next day. And then days with no symptoms in any joints. The pain is usually symmetrical - right wrist today, left wrist tomorrow.

My xrays are normal, my "sed" rate is barely elevated.

To look at me one day you would think there is nothing wrong. The next day I might need a cane to get around the house.

A joint, such as my wrist might begin to ache and get right bad for maybe 3 or 4 house (I have pain meds) and then the pain goes away. No swelling, very little redness.

I have always considered myself very lucky that it's not worse than it is.

Does any of this sound familiar? Thanks for your replies.
Mary

Hi Mary, welcome to AI. I have many of the same symptoms you described. The jelling that never goes away. If I sit for a few minutes, I have a hard time getting up and moving with out pain and stiffness. My pain travels all around. Not just day to day but from moment to moment. I told my husband it's like someone has made a voodoo doll out of me and is sticking pins in it here and there. LOL Are you on any medications now? Sometimes I swell, sometimes I don't. This disease is very strange and unpredictable. Good luck to you and I hope you get some answers and releif very soon.

CinDee

Thanks for the reply. I went through a lot of different medications that did nothing until Methotrexate was prescribed. I take darvocet for when a joint is "inflamed".

I usually compare my problems as someone putting a blindfold on and throwing a dart at a picture of a body -where the dart lands will be the place I hurt that day.

I just have not heard of anyone who has symptoms that are so..............sporatic as mine. If that makes sense. It's still hard to make sense of feeling pretty good one day and then next not being able to do much at all. It's hard to plan anything - and I don't. I hate to let family and friends down becasue I'm having a "bad" day.
MaryDear Mary, Welcome to the message board. Your symptoms sound very familiar and we all seem to need to 'change medications' now and then. I had years of treatment with Methotrexate (we call it MTX here) and then I had an operation and had to add prednisone and now remicade. Maybe our bodies change? It sounds like you are having some severe pains , so maybe you need to re evaluate your meds? just wondering. sarahThanks Sarah. My doctor seems to think MTX is what is best for me - and it is keeping the RA from getting any worse or damaging my joints. But I'm at the point of suggesting a change. I have asked him if he thinks some of the newer meds would make me have less discomfort - and he says no.
Mary Hummm, does that sound strange? Have you been seeing this doc for a long time? SarahWelcome Nana52...

...I think you're my long lost twin! You so described me to a T. It is very frustrating, isn't it? It's hard for people to understand why you could be hurting in one place in the morning and somewhere totally different by night fall. And how you can not plan around it. It comes when it wants and vacates when it wants. Stinky diease!!!

Well, glad you're here. There are a lot of people who can help you, so ask away!

Thanks Lisa. You don't know how good it makes me feel just to have someone say that they have the same symptoms I have and feel the same way.

I have made plans this month for different things, small vacation, plans to attend recitals etc. and I am worried that when the time comes it will not be a "good" day for me. I HATE not knowing if I'll be able to do what I've planned to do!!!Mary. This is exactly the way mine is. But I have added flu type symptoms
and have had lots of headaches with mine.Thanks, Lori. I guess the way I feel is my "normal". This started when I was 22 years old. I am now 52.

"Flu like symptoms" is how I describe how I feel to other people. Or another example would be if you had not exercised in years and one day went out and spent the whole day at the gym - the next day you would feel "sore all over".
MaryExactly Nana52...

I had a really bad flare in my neck last weekend and was affraid I was going to have to miss my neices graduation...but I made it. Well she is really my aunt's daughter but she is 18, and I'm 40. She has always called me aunt Lisa. Anway...I had to be there for her. This was a very difficult time for her. My grandmother (hers too) passed away last October from complication due to RA, Lupus, and Osteo. So she was very upset that Grandma couldn't see her walk across the stage...so I just had to be there.

Anyway, enough rambling. I hope knowing that you're not alone in your symptoms helps ease your stress.
Welcome to the board!Exactly like me, This morning when I woke up my thumb and my groin hurt now tonight my knees are bothering me and my thumb is fine groin is ehh...
Strange.... My mom and I have been talking about this alot lately, I have a few aunts that do the same.. with the moving joint pain...
Linda
What is "Jelling"??
Linda
It's kinda like how jello is fluid while actively stirring and hot. Then hardens while it is still and chilled. I guess it would be considered stiffening as well. Does that make since?
My symtoms are similar. I have the occasional bad flare but otherwise they are much the same. I take panadeine,
codeine and occasionally antiinflams - I was good with my diet for a long time but have slipped over the past year with my eating habits. It is a gamble I have chosen to take - I have had RA 10 years so will have to see how I am in another 10 years. RA is the most unpredictible of diseases, I dont really think rheumatologists even understand it. I know after 10 years of reading thousands of articles I still dont.
Welcome to the board.hi Nana52, I have psoriatic arthritis and all my symptoms are the same but with PA it can jump from one joint to the next within seconds . luckily my xrays are all showing ok which means the medications are working at controlling the disease just because xrays show nothing it doesnt mean you dont have pain. i have severe pain every day even with strong painkillers. i was on methotrexate but now i have arava and have just been started on a pred pack. all the best and glad to have you join us . ally

Welcome to the board.

That's exactly how mine started. Moving around from one joint to the next, each joint hurting for a day or two. My RD told me that I had an atypical presentation of RA.

My SED and CRP were elevated a bit, but I don't think they were overwhelming. My ANA, RF, and Anti-CCP, though, were highly elevated. I have only on a few occasions experienced swelling or redness, but I would describe the pain as SEVERE. While I'm sure there is worse pain, it's the worst I have experienced to date in my life. The darvocet doesn't really touch the pain, but I guess it does take the edge off of the anxiety.

After about a year, the pain in the joints continued to migrate, but the pain would linger longer and longer in the joint. The longest flare I had in one joint was a month in my left shoulder.

Welcome to AI Mary. How much MTX do you take. It does sound like it's working....but maybe you could take a little more?

Your symptoms sound like the rest of us. I'm like that on a regular basis with acute symptoms in between. I'm not 100% sure acute symptoms would be the right word; but like for the past couple of weeks I've had a horrible time with just one hip. If it doesn't settle down soon I'll go in and have a cortisone injection and I'll be fine for a while. That's happened many, many times over the years. I'll have a knee (Often both) or shoulder that just won't stop. Once I get an injection I'll be fine.....at least for a while. OFten we'll have to tweek my meds a bit as well.

Point is; you aren't alone and we're glad you're here. I was the same age you were 13 years ago when I was dx'ed. I've managed pretty well but I wanted to tell you that the newer meds are good; but they won't stop all your pain. They do help alot; but if you are managing pretty well I wouldn't do much more than increase your MTX if there's room there. I think 25mg is as high as they'll let you go for RA. If you aren't at that dose yet just one more pill could make a big difference for you.

Good Luck. Hope to see more of you here.

Thanks, thanks, thanks to everyone. It's good to hear that my symptoms are not so unusual.

I take 45mg of MTX on Mondays. Six 2.5mg tablets once a week. I don't even want to know what I'd feel like without the meds.

Before MTX a joint would hurt, I'd take a couple of darvocet and simply sit there for 2 to 3 hours in so much pain I couldn't even concentrate on the television. That does not happen now.

The doctor suggested a cortisone shot for my shoulder one time but I said no. Never had one, but have heard that it's painfull - of course if the pain in my shoulder had been that bad I would have said yes.

Guess I've learned to live with it. Like today, I was planning on going to the grocery store buy my foot is still sore from yesterday so I'll wait until tomorrow. I couldn't sleep well because my shoulder kept waking me up. And so it goes........................
Mary

Did anyone mention palindromic arthritis? A common precursor to RA as in my case.I've never heard of palindromic arthritis. I Googled the condition and it does seem to be similar to what I've been experiencing. I'll have to read more about it online.
Mary

45mg? WOW. I've never heard of anyone taking that much MTX. I did hear of one person on here taking 30 once....but I can't find that person anymore.

How long have you been on a dose that high? I'm at 25mg and would like to increase it.....but don't think my doctor will. Do you have any adverse reaction from it at all?

So sorry, dummy me, that would be 6 tablets of 2.5mg totalling 15mg a week. Did you notice a change when your dosage was increased up to 25mg a week?you really really need to get a second opinion. You're whole treatment plan should be evaluated. The symptoms you described are of a disease that is not in controlMy dr at the time told me that palindromic arthritis could go away completely, or develop into RA or lupus.

I developed RA after the birth of my first child.

Mary; I have noticed a positive change everytime my MTX has been increased. I really can't tell you any negative things that have happened with me as the result of an increase; but some do have negative side effects once they get to a certain point. Luckily for me that hasn't been the case.

I will say that after every increase the fatigue the next day gets worse for a little while.....but soon I adjust to it.

I'd ask your doctor about an increase before I'd add anything else if it was me personally. Sounds like that just might do the trick.