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Rheumatoid Arthritis
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Posted 10/13/2013 4:31 PM (GMT 0)
Good morning, I recently switched RA doctors and she has diagnosed fibro. My RA test results still come back positive, but that my symptoms don't match. Now for the past 3 weeks both my shoulders leading down my arms hurt most of the day and night and my thumbs are hurting and left one is pretty swollen, is any of this worth going back and letting my RA doctor know of the changes? I am only 35 and I think my doctors think my issues are in my head and that I am too young to have RA. Any advice is helpful. Thanks!
Posted 10/13/2013 11:03 PM (GMT 0)
Hi Teslagirl, did your Doctor explain to you specifically why they think even with RA coming back as positive she thinks it is Fibro? I have also had some symtoms that are not "classic" RA symptoms over the years as well but my Rheumy has always treated me for RA and it has worked.

Don't stress! Write your questions down so you remember to ask all of them at your next appointment and try not to dwell on them and worry too much. I know it is hard, stress though especially about things outside our control I have found makes me flare worse and last longer. Do something to help you relax. Take a long bath, listen to some soothing music, whatever helps you not to dwell on these things do it. I pray and meditate on things I have read out of devotionals and the Bible. It helps me alot not to dwell on things and to give them up.

When you said "I think my Doctors think my issues are in my head" I can really relate. I spent almost 3 years trying to get Doctors to listen to me about my symptoms and felt like that every day. To the point that I started to wonder if I was somehow exasperating them. Don't second guess yourself.

In my experience RA can also affect all kinds of connective tissues as well as tendons and muscle aches. I had the synovial sheath on my achyles tendon rot away and bunch up like a sock around the base of the tendon. My Rheumy had seen this before and knew what was going on and also that it is related to RA. It didn't affect a joint and my General thought it was a bunch of hogwash because he had no clinical experience treating people with severe RA. My entire tendon hurt, all the way up into my calf as well from this.

I would definitely take some pictures of the swelling of your hand and give your doctor a call. In case the swelling goes away you can at least show her the pictures so that she can see that you are having flares and that something with your meds needs some attention.

I hope you feel better physically and that you have peace in your heart. Living with this disease is not an easy road. -Don
Posted 10/13/2013 11:28 PM (GMT 0)
Hello Don, thanks for responding. My first RA dr said that I needed to sleep more an exercise and said that I don't have RA, then she did my blood work and it came back and she back tracked however still said that my symptoms don't match my test results. My CCP tested at 203 and my RA Factor is at 36. So I switched dr my new one seem to listen, but after doing blood work again not the RA Factor test she said that I don't have RA that she believes it's fibro because my symptoms don't match RA symptoms. Now my shoulder area is hurting on both arms and my thumbs this week, it has been my index finger and down to my ring finger on each hand. I write everything down because I feel that I am battling to get them to listen to me. I am on gabapentin twice a day and it really helps with the nerves in my back (which was one of my symptoms that I had been dealing with for over a year) but I work and can't take the morning pill it just makes me too tired. I have Kaiser which can be difficult to get them to listen and help. Thanks for your advice I hope they can do something to help this pain, because what I am taking now isn't cutting it.
Posted 10/14/2013 12:15 PM (GMT 0)
Hang in there! Sometimes it takes a while for Doctors to come up with a treatment plan that works. I'm glad to hear you are documenting everything well, it was one of the things that helped me to get proper treatment and finally some relief.
Posted 10/14/2013 2:19 PM (GMT 0)
Thanks again!! Yes I have realized I am my own advocate :) Take care!!
Posted 10/14/2013 3:10 PM (GMT 0)
Teslagirl, you can have both Fibro and RA and the symptoms are similar in a lot of ways. I have RA, Sjogrens and Fibro and my doctor told me that the treatment is basically the same for all 3. As Don stated, documenting is a great idea. I actually have a medical journal that I try and write in every day so I can take it with me when I go to the doctor. I suffer a lot with brain fog and if I don't write if down, I forget as something new goes on almost daily. And don't feel bad if you have to question your doctor about anything. They are there to help you and as you said, you are your own advocate. If this doctor doesn't answer your questions, then keep going until you find the right doctor for you.
Posted 10/14/2013 4:40 PM (GMT 0)
Hi Teslagirl, I also have both Fibro and RA. I was just diagnosed with Fibro last week so I don't have much advice for you except to say that I am surprised that your doctors don't seem to be aware that it's not uncommon for the two to go together. I would contact your second doctor immediately and ask their opinion as to whether this is a likelyhood for you. In my opinion it would be a mistake to drop the RA meds if this possibility was not investigated first. Good luck. Neenaa
Posted 10/15/2013 3:00 PM (GMT 0)
Thanks everyone! So my dr replied to my email and said that she thinks it's bursitis not RA, but I have a funny feeling that they are just not wanting to diagnose me with RA because it will follow me. However I want to have some relief too and if that is in fact what I have I want to treat it.. So my journey continues in finding out what is wrong. Thanks everyone again!!
Posted 10/16/2013 8:13 PM (GMT 0)
Hey Teslagirl,

I also don't seem to match the typical symptoms for RA. Yet my bloodwork is positive and I have a great response to most therapies (biologics).  With autoimmune disease, I feel it's a bit short-sighted for a doctor, especially a rheumatologist, to dismiss a diagnosis based on symptoms that may slightly differ from the textbook cases.  That's like a doctor looking at your hands alone and stating that you don't have RA because your hands look fine.  It makes so sense to me.

If you have a positive rheumatoid factor (RF), especially with your young age, there is most likely something autoimmune going on.  It may be undifferentiated connective tissue disease (which is way of saying that one disease hasn't fully manifested yet), but positive RFs are not common in young people. 

Posted 10/16/2013 8:43 PM (GMT 0)
Thanks Elcamino! You know I just can't get any dr to listen to me. I think because of my age. I thought this one was going to be different. I have read that if your CCP comes back above normal then you either have RA or will, mine have come back over 200 all 3 times they have tested me. I know the RA factor can be a false positive, but from what I have read the CCP can't.. Last year I spent a lot of time in ER and at that time I have only been tested twice and every dr said you have RA now they just need to find the treatment. Well I am still trying to find a treatment. At this time I take gabapentin (night), Percocet, tramodal and I just got mobic, because she thinks I have bursitis and not RA in my shoulders.. Percocet and tramadol help some but don't want to be on them forever. Gaba helps my nerves but can't take it 3 times a day like prescribed cuz I have to work and it makes me super sleepy.. Mobic I just grabbed so haven't tried it yet. Thanks again everyone.. If this dr does t help I will have to go further out with kaiser.. Fingers crossed!
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