Symptoms of Ra

By Jen Sunday, January 22, 2012

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Hi everyone, I have been experiencing major stiffness and joint pain in my feet, knees, shoulders, neck, & fingers for a few weeks now. I've had a MRI on my neck - I initially went in for neck and arm pain. Nothing on the MRI - physical therapy ordered. Then I had knee and foot pain - nothing presented itself on the x-ray. Then, my primary Dr ran tests for Ra and lupus - I tested negative. My sed rate was elevated and I am low in vitamin d, so vitamin d supplements perscribed. The Dr. referred me to a rheumatologist - the problem is that my appt is not for 8 weeks. I am only on ibuprofen and tylenol with codeine for pain, which I don't feel is working. My primary dr says I cannot see her for 3 months, which I feel leaves me with no medical support right now. I have 4 sessions left with the physical therapist, which has been helpful in learning range of motion stretches and just support. I have been going through so many emotions right now - sometimes I'm hopeful and other times just crying from the pain and fear. I have 2 children 7 and 4 years old, which keeps me physically moving and distracts me from my pain. I am lucky that I have a supportive husband and many friends & family in the area. I am trying to see if I can get an earlier appt with the other rheumatologist. But, I am trying to emotionally prepare myself for the fact that I will not get any pain relief or answers to what is causing this for 2 months. I have been reading so much about Ra and other autoimmune diseases, which has been so helpful. Any tips or words of advice are appreciated. I am mainly interested in what I can do to alleviate pain in my feet - I am limping from the pain. I feel pain in my toes and heel, so every step is a challenge. Thanks so much - I have learned a lot from reading members posts and questions.

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V, Health Guide

1/22/12 5:43am

Hi, Jen,

The foot pain is one of the worst and affects our mobility. Ugh The first thing I did while waiting for a Dx was to buy a really good pair of shoes. I still have those shoes, only now they have custom orthotic supports in them. LOL

I understand your frustration and fear. Waiting to see an RD is common but not at all helpful. Have you ever taken a Medrol pack (steroid), and did it help you? If your PCP doesn't want to prescribe that, would he or she prescribe prescription strenght anti-inflammatories? If not, you can buy naproxyn (Aleve) OTC and see if that helps.

Heat and cold help the joints feel better. I mostly use heat, but I put cold on my shoulders to reduce the swelling. You just have to try it and see what works best for you.

I don't want to write a book here, so I will stop now. Just want you to know that it will get better. Hang in there, Jen. Ask anything you would like, and let us know how you are doing.

Blessings,

Jen

1/24/12 12:52am

Thank you so much for responding V - it feels great to be heard and supported. I bought some dr scholl's inserts to wear in my 1 pair of really comfy shoes, which helps a bit. I bought some orthotics - not customized ones, but we will see if they work. It is weird, but I feel a little better today - I was able to walk down the stairs regularly without major pain. My shoulder feels so much better than it did and I was able to cut up an apple for my kids without too much pain. I hate to feel hopeful because I know tomorrow I can feel much different. I am learning to listen to my body and rest when I feel tired or my feet are throbbing. I tried to see the other rheumy and his next appointment is in May, so I should feel lucky for my 8 week wait. I put myself on the cancellation list, so here's to hoping a call comes before 8 weeks. I just wanted to thank you again for responding and hope you are doing well. Thanks, Jen

V, Health Guide

1/24/12 7:46am

Hi, Jen,

You are already finding your way. You identified one of the most frustrating things about RA. It is so unpredictable. One minute you may be fine, and the next minuite you may be in a lot of pain. I have always thought that is why so many people...like our friends and family...have trouble understanding RA.

I'm happy to hear you are getting a bit of a reprieve on the pain front. And I am double happy to hear that you are listening to your body. The hard truth is this: If we don't listen to our bodies and rest when we need to rest, we will pay for it big time. Usually, we end up in a flare, and that is just not worth it, ya know?

If nothing else, RA teaches us to slow down, enjoy each day, and to be patient. Uhmmm...have to admit, I am still working on the patience thing!

Blessings,

Jen

1/30/12 2:52pm

Just to update you V- I was able to get into another rheumatologist next week. So, I feel I can hold out a little better now. I think I am just tired of being in pain and not knowing the cause of my imflammation. I want a diagnosis and the appropriate treatment, but in a way, I dread it because I know it is not an easy road if I am diagnosed with RA. My husband will be at the appointment with me for support and to ask questions if I'm missing something. Thanks for responding earlier and hope you are doing well today. Take care, Jen

Ellen Galo

2/ 2/12 10:32am

I can empathize with you - I was originally going to have to wait 9 weeks (but my GP never said I couldn't see him, he was really good). I can only take Celebrex as far as NSAIDS, burned out on the rest of them (BAD REFLUX, stomach pain). When the tests came back positive, he said, we need to get you in sooner. I had to wait instead "only" six weeks - ironically by the time I got there I had read up on meds and was worried about taking anything - and that's another whole story. It does take a while to find what's right for any one person. My doctor did liver tests first, and that ruled out the usually first-line drugs (methotrexate, etc.) So he put me on Remicade, which I was terrified of. I did have a weird reaction to the drug, then they tried adding 100 mg Benadryl to the IV, which almost made me have an accident on the way home (they didn't bother to let me know beforehand so I could have my husband drive the 70 miles with me). AFter that I quit for a while while I researched the whole thing (but the Remicade took away ALL the pain and inflammation .... however, when it wore off 2 months later, all of a sudden I couldn't put any weight on one ankle. It had gone bad, and the Remicade covered it up and/or helped keep it from healing. It took away TOO much inflammation! (some is necessary for healing and immune system protecting you, believe it or not!)

SO - I wish you luck,I congratulate you on becoming your own advocate!

(Now I just want to know why the latest pocket-size Physicians Desk Reference no longers lists any of the biologic meds - weird, what's that about?)

Dona

2/ 2/12 10:43am

If you can, stay away from processed foods, nightshade veggies, and anything with sulfites. That seems to work for me. Have RA almost 2 years now and am still not on perscribed meds yet. Diet, so far, is key. Fingers crossed!

Lgl_Asst

2/ 2/12 11:03am

8 weeks for a first appointment isn't bad, I had to wait 6 months to get in to see my first rheumatologist. What he did and what most do is the first appointment is a long one, I spent an hour with the rheumie, talking about my symptoms, my history, family medical historty, etc. he took x-rays and we talked about a number of possible meds and he gave me sheets to read about the medication he was putting me on what may be added later so when I walked out of the appointment I have definite dx or RA, my RA factor was elevate, my sed rate was through the roof and my C Reactive Protein was positive another test used to help determine if its RA or not. I started on sulfasalazine and about a year later we added Methotrexate and then a few years later added Humira. While the meds can be scary do try them as most reactions aren't that bad and a lot will go away after your body gets used to the medication. I had no problems with the Sulfa, a slight problem with the Methotrexate but that corrected itself after being on the drug for about a month, as you only take it once a week it can take a while for the stomach issues to go away and we knew we had a winner after my first shot of Humira as I responded quiet well to that and it has my RA in remission so there is hope out there. As far as pain goes I would try Aleve first to see how it goes or Advil I was on 800 mgs of that and continue to take that when the pain gets bad as it can be switched with tylenol so I take my Tramadol first and a few hours latter if the pain is still bad I take the Advil. I would call your PCP and see if they would give you a stronger pain medication until you can get in and see the rheumy and, as someone mentioned, heat and cold can help. My RA does not respond well to cold at all, it freezes my joints and makes them more painful, but heat does a wonderful thing for my joints. My daughter was 7 when I was diagnosed a few weeks after I got a divorce, thankfully I lived near family and friends so on bad days I had help with her. She is doing fine now, she's 17, working in a nursing home and helps me when I need it and while she hates that I have RA, she has gotten to know it well enough that she knows I can never say for sure I will be able to do something as the disease is so unpredictable. That's the hard thing about the RA, the unpredictablility,but you will learn how your body is going to react to certain situations and weather, etc. and you can prepare for that.

Poppy

2/ 2/12 10:19pm

I have had RA for almost 13 years and it is a frustrating illness to deal with. I understand wanting answers, but sometimes hearing the diagnosis is tough so I am happy that your husband will go with you.

Hot showers, soak your hands in warm water in the sink and keep up on your ibuprofen so that it stays in your system. If you can find an moist heat heating pad they are wonderful :) The comfortable shoes are key as well. I am a kindergarten teacher and on my feet all day, but the shoes really do make a difference. I have also found that the spray on Icy Hot is a nice little gift during the day. Spray it on in the a.m. after a hot shower and you can feel it all day.

I am also glad to hear that you got an earlier appt. Good luck. I am afraid that the frustration doesn't go away, but you get better at knowing your limits, asking for the right kind of help, and pain management. Hang in there!

Poppy

2/ 2/12 10:19pm

Cherie

2/ 2/12 11:25pm

I have heating pads, ice packs, velcro splints, Bio Freeze equivalent non fragrance, and antiflamatory creams all for treating chronic pain and swelling caused by RA. I also am sero negative so the way I was diagnosed was by symptoms. You will eventually find the right medication to get you fewer flareups and fairly comfortable.I find it easier to bull through a flareup as long as I know that it WILL END. The chronic constant pain is exhausting...be careful with the pain meds if you tend to build up a tolerance to them. They can stop working on your pain and keep you addicted to it without benefit. I learned the hard way and had to detox myself from a med that quit working for me.

Good luck to you and I wish for you a good Rheumatologist that listens to you and is up on all the newest treatments for you to try. Keep sharing with us here too we need you.

Cher

Jen

2/ 8/12 1:11am

Thanks to everyone who responded - such great advice and support. I had my appointment today and the rheumatologist tentatively diagnosed me with RA - he is running tests on other diseases such as Lyme and parvovirus to rule them out. So, in two weeks I see him again for those results and see how I'm doing on the meds. He gave me the choice to start methotrexate and folic acid now instead of in 2 weeks - I chose to begin it now since I've heard the methotrexate can take awhile to kick in. He also prescribed me prednisone if I get in a lot of pain. So far, my pain has lessened from a few weeks before, so I don't feel a need to take it, but it is good to know I have that option. I am so glad that the rheumatologist was compassionate and explained everything clearly. He wants to treat the RA aggressively, which is right on course with everything that I have read. So, if I do have it, I will probably be on a biologic later. Dr. said there is a small chance of remission 30% - gives me hope, which I don't know is a good or bad thing, since I want to be realistic about my condition. I've had time to process this and live with the pain - so I was more prepared for his tenative diagnosis than I thought I would be. I'll update you all in 2 weeks. Hope everyone is doing well and thanks again!

Symptoms of Ra

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