Rheumatoid Arthritis suffers?

[CruiserMom]

Before anyone says "Go to the doctor", I've already been to my primary care physician. A few months ago, I began having joint pain. It started in one finger, a few days later it was all my fingers, then my wrists and ankles, then my knees and elbows and shoulders. I had joint pain for about a month, then it eased off. Then about a month later, it started again, the same way. Now one of my arms is worse than the other, with severe soreness (not sharp pains) in my right shoulder, elbow and wrist, and a little soreness in the rest of my joints. I don't notice any inflammation.

I went to my doctor during the first spell of joint aches, and they took blood and ran a test of some sort. The nurse called me and said it was negative. But I have been reading on the internet that it is possible to be negative and still have rheumatoid arthritis. I am 47, and I had an aunt with RA.

If you suffer from RA, did your pain start like mine? Did you test positive from the start? Should I ask for a referral to a rheumatologist anyway?

 

[DeluxePrincess]

RA is tricky. I had small flare ups like yours for about 5 years until I sought out a rheumatologist. Last year I had unbearable pain in my knuckles and knees that did not go away after a couple of months. If your pain worsens, it would not hurt to see a rhuematologist. He/she can rule out RA and other diseases that have the same symptoms. I had extensive bloodwork with the rheumatologist that my primary doctor did not order. I was diagnosed with RA and have been getting treatment for it.

 

[Feralpeg]

I was also tested and came back as negative for RA. Mine also started in one finger. When I wake up in the morning, it is difficult to bend my fingers. One hand is worse than the others. One finger aches much more than the others and is always swollen. The actual joint looks white.

I have some pain in my knees and shoulders and, oddly, my toes. It gets worse some times. I've not really been able to determine what causes it to get worse.

The doctor simply told me to take arthritis strength Tylenol. It helps some.

 

[CruiserMom]

OP here...my PCP gave me Ultracet to take. I would take Ibuprofen but when I take it several days in a row, I start having a skipping heartbeat. The Ultracet helps some, when the pain is not bad, maybe cuts it in half. But when it's bad, it doesn't help much at all.

 

[smphbear]

I have been working with a rheumatologist for about a year and a half. My primary care sent me to him.

I run low grade fever. Lots of stiffness, pain, and cracking in the joints. A great deal of fatigue. Stiffness and cracking gets worse at times especially with cold weather.

We started with a medicine to help me sleep because my sleep was poor from being in pain and unable to get comfortable to sleep. That helped me sleep but didn't remedy the problems. Then he added an anti-inflammatory morning and night. It helped, but I wasn't back to "normal". Then, he had me take a month of steroids. I felt so much better, but of course you can not stay on them. Then he added an RA medicine. It messed up my stomach a bit, but I was able to build up to it.
He had told me to take the steroids the week before and the week of our recent Disney trip so I could keep up with the family a bit better. I came back fully expecting the crash after the steroids. The RA medicine seems to have kicked in. For the first time in a long time (other than on steroids), I am not totally exhausted. I even have the energy to exercise by riding my bike.

Hang in there and work with your doctor. It took us a while, but he feels that we have the right diagnosis. I feel like we have finally found a good combination for meds. We also invested in a Tempurpedic bed. That has also helped me sleep better.

Good luck!

 

[rwdavis2]

My wife takes methotrexate for hers. It worked very well. The rheumatoid had also attacked her lungs which took about 2 years to figure out. Again, the methotrexate does the trick.

 

[walden]

I've been diagnosed RA. It is not a simple diagnosis and I have questioned mine. Talk to your docs.

It is a pain in the rear, a limitation, a stinker, a life limiting thing. But not a life ender. It flares, it goes dormant, and I function and I deal and I cope.

On a personal level -- my big beef with the diagnosis? I never smoked. Why is it that if I disclose my diagnosis people assume that I had a tobacco problem? It is an auto-immune thing that is not exactly hereditary but does somewhat run in families.

Bottom-line it is copable-with. I hope you don't have it, but if you do -- life goes on.

 

[luvflorida]

I had testing done last year, and x-rays taken of my fingers. The tests came back negative for RA, but the x-rays showed that I have osteoarthritis in my fingers. I go for my annual physical in a few months, and I'll see about getting another test for RA. My mother and an aunt had RA, and I believe it is hereditary.

I have no inflammation except for swelling in the joint of one finger. That's where the stiffness started. I can feel aches in my other fingers and in my feet, but nothing bad enough to interfere with my daily life. The worst can be when first waking up and getting out of bed. I can't just jump out of bed like I used to when I was younger, that's for sure! And, if I sit for too long, I can feel the stiffness when I get up to walk, but it goes away as long as I'm active.
So far, I haven't taken anything for the aches. I hate taking any kind of medicine, but I know it could be in my future. I love to walk and usually do two to three miles at least five days a week. I did have to go and buy a pair of sneakers with more cushiony material for the heels and toes.

Has anyone here had any experience with hot tubs and arthritis? I've read that they are good for easing all those aches and pains associated with arthritis.

 

[anniemae]

My ra hit me like a truck, one day fine, one day barely able to walk. My feet hurt first, so they thought I had plantars faciitis. Treated that, then I woke up one day and my knees were so stiff I could hardly move. I also could not bend my fingers at all in the morning. It took a while to diagnose me. My pcp said it was just aches and pains of getting older. My knee pain continued to get worse so they suggested physical therapy. Finally, they did bloodwork which came back positive for RA.

The thing wih RA is that the sooner you get treatment the better. Irreversable joint damage can occur in the early stages. The medicines slow the progression of the disease and can prevent damage. A rheumatologist may do different bloodwork and test for other autoimmune disorders also. If you think you have RA, you may want to see a rheumatologist. It would be worth the peace of mind.

 

[christiane]

On a personal level -- my big beef with the diagnosis? I never smoked. Why is it that if I disclose my diagnosis people assume that I had a tobacco problem? It is an auto-immune thing that is not exactly hereditary but does somewhat run in families.

RA has been associated with smoking. The association is not direct, but if you have the genetic predisposition for RA, smoking contributes to the development of the condition.

Of course, non-smokers can get RA as well, so it's not fair to assume all RA patients are smokers.

OP, was the test performed by your doctor Rheumatoid Factor? If you have ever had psoriasis, that can cause arthritis. I would also ask to be checked for lupus.

I would definitely go to a rheumatologist asap. Hope you get an answer soon..

 

[TnTsParty]

My DH has RA inflammatory arthritis. Looking back it appears he has had symptoms of it for years but he never went to the dr for the flare ups therefore didn't get diagnosed until a year and half ago. That resulted in quite a bit of joint damage unfortunately he is only 38. It doesn't help to hear people comment how he is too "young" to have arthritis - which is one of the biggest myths.

But to answer your question OP yes his pain a year and half ago seemed to affect almost every joint at one time or another. Before that it was a flare up in his toe, than a flare up in his knee or his shoulder but then it seemed like every joint was inflammed. It wouldn't hurt to get the opinion of a Rhuem as that is their specialty. Best of luck to you and hopefully if it is RA you will get treatment to help and ease your pain.

 

[luvflorida]

I've been diagnosed RA. It is not a simple diagnosis and I have questioned mine. Talk to your docs.

It is a pain in the rear, a limitation, a stinker, a life limiting thing. But not a life ender. It flares, it goes dormant, and I function and I deal and I cope.

On a personal level -- my big beef with the diagnosis? I never smoked. Why is it that if I disclose my diagnosis people assume that I had a tobacco problem? It is an auto-immune thing that is not exactly hereditary but does somewhat run in families.

Thanks for the clarification about RA not being hereditary. I've read about the smoking and arthritis connection, also. My mother, my aunt, and myself have never smoked, so no correlation here either.

 

[anniemae]

I never heard of link between smoking and RA. I don't smoke nor do I have a family history of RA.

I can really relate to the pp who said everyone comments that her DH is too young for RA. I get that a lot too. As well as "It's just arthritis, just take some asprin." I think the word "arthritis" makes people think of an 80 grandmother with achey joints. RA is not osteoarthritis, it is an autoimmune disorder.

 

[CruiserMom]

Thank you all so much for your responses. To the pp that asked if the test performed was a rheumatoid factor, well I don't know. I didn't know enough at that point to ask about the test. Now that I've been reading on the internet and reading all of your responses, I know more and can ask better questions.

I'm going to make an appt to go back to my regular doc, ask about the tests performed, and ask for a referral to a rheumatologist. If it is RA I want to get treatment sooner rather than later.

 

[RNMOM]

One of the above posters mentioned that "psoriasis can cause arthritis". This isn't quite correct. I have psoriatic arthritis and do have some mild psoriasis but they came on together. PA is in the same autoimmune family as RA and OA. You can have more than one of them at the same time and also have lupus tossed in. I also have fibromyalgia. It can cause all the same symptoms. The treatments are similar but sometimes different. Lately, actually all winter I have been having profound tiredness and needing a lot more sleep. I hope warmer weather will help this.

PA causes diffuse joint pain but also a lot of swelling. My first pain was my left ring finger. It also swelled up to hot dog sized. I thought I had broken it and went to an ortho doc who immediately told me to see a rheumatologist. My blood testing was very difinitive and she started treatment right away. She also has injected the fingers that swelled for me and after an injection or two the swelling went down and I could use them again. I do have weakness in my fingers but it only bothers me taking heavy things out of the oven or fridge. That took a couple months to get an appointment and it has made a big difference. I also have osteoarthritis in my knees and back. I take methotrexate and pain relievers. For the fibro I take flexaril at bedtime and it has helped a lot.

There are a lot of tests that can help determine what type of autoimmune disease you are dealing with and what treatment is best for you. I would advise making an appointment soon. Good luck.

 

[brittsmum1998]

I was told by my rheumatologist that the RA factor can run negative for up to 3 yrs (maybe more?) before you can test positive for RA. My test showed positive (I forget the #) which is why the dr. said I had had RA for at least 3 yrs prior to test.

I get Remicade by IV once per month, gold pills day and night along w/ methotrexate once a week. They say the metho works better if you get the shot but my muscles tend to flair up when I took the shot so I take 10 pills each Sunday night. I take vicoden for pain (which is enough to take the edge off and allow me to walk) late in the afternoon so I can function. That too is only when absolutely necessary.

The biggest complaint for me is lack of energy (although I am also diabetic) . Steriods are the drug of choice for my flair ups I feel like a million bucks unfortunately my sugar goes thru the roof and a couple yrs ago I ended up in hospital w/ heart issues they think were caused by the steroids so its few and far between for me now.

Oh yeah, I smoked. I quit a couple yrs ago, my RA seems to feel worse. I mentioned it to the nurse, she says alot of people complain of more pain once they quit smoking . Prior to this post I didn't realize, they could be related.

 

[happywanderer2]

I've had the dx.of RA for about 8 years now. Started out with the knuckles of both hands being sore in the morning. I like to sleep with my hands over my head sometimes so I thought I must be banging my hands on the headboard at night. But, then my fingers got stiff and I got what they call "trigger finger" on both hands, but left greater than right. Finally went to dr. and they first thought it was carpal tunnel and sent me to PE--didn't help

Finally they tested for RA and it came back positive. Gave me steroids at first and what a difference. I didn't realize how fatigued I had been. It was like waking from a dream. One of the definitive symptoms of RA is that the joints effected are bilateral. Meaning, you'd have stiffness in both hands or both knees or both shoulders. Fatigue is also very common--not tiredness like after working all day, I'm talking a bone-aching fog-inducing tiredness.

I tell everyone that it was like being in the Wizard of Oz movie at the beginning in black and white (before the steroids) and then Dorothy opening the door of her house after landing in Oz (after the steroids).

I've been on methotrexate and so far it's kept it under control. I still have stiffness and fatigue sometimes, but it's manageable. But, I hope what you have is just OA (which still sucks).

 

[CruiserMom]

I was told by my rheumatologist that the RA factor can run negative for up to 3 yrs (maybe more?) before you can test positive for RA.

That is exactly what I read on the internet, and that is why I think I need to keep pursuing a diagnosis. I forgot to mention in my original post, but I also had an xray of my finger and wrist. I guess it didn't show anything that pointed to RA, but maybe I am just starting with it, so nothing is showing up yet.

Last night I took 2 ultracet before going to bed (had lots of achyness in my wrists, elbows, shoulders, and knees yesterday), and was very sleepy but kept waking up until about 2am. Then I figured out that the achiness in my legs was keeping me up. I took an Ibuprofen 800mg and was able to get to sleep. I have enough trouble sleeping sometimes without having joint aches causing me more problems!

 

[danceteacher]

I never heard of link between smoking and RA. I don't smoke nor do I have a family history of RA.

I can really relate to the pp who said everyone comments that her DH is too young for RA. I get that a lot too. As well as "It's just arthritis, just take some asprin." I think the word "arthritis" makes people think of an 80 grandmother with achey joints. RA is not osteoarthritis, it is an autoimmune disorder.

Isn't that the most annoying thing? Oh gosh. I never thought of that...of course...asprin!

I have never smoked. No one in my family has autoimmune anything and I was diagnosed at 31. After three years of working my wonderful, fantastic, amazing Rheumatologist has my medicine combo absolutely perfect. He says I have "one of the most aggressive cases he has ever seen". To put this in perspective, I am a dance teacher. I move for a living. I was in a wheelchair this time last year. I am back to work now. It took almost a year. I'm not dormant or in remission or whatever you want to call it...but I'm more like myself than I have been in years. I promise this is something you CAN get through. I had been through almost every kind of medicine available for RA treatment in my short tenure and have had some weird side effects. So I wish you well in your journey...I hope like heck you don't have it, but if you do...feel free to PM me. No question is too trivial. I've been on two Disney cruises with this diagnosis and the last one I was barely walking. We plan to tackle the World next summer. I may have RA, but it does not have me!
Cari