Vague arthritis diagnosis - frustrated, scared and confused

Bones, joints and muscles
1

Hi everyone,

I got a diagnosis today from a rheumatologist of "a rheumatoid variant arthritis." I'm a 38 year old female with a history of pain: daily pain in my thorasic spine, occasional flare ups in low back, right hip, and right shoulder. Pain goes back to my late teens/mid 20s. I tested negative for RA and lupus, and negative for the ankylosing spondylitis gene. C reactive protein was high, though. Low back mri showed some bone changes but nothing suggesting ankylosing spondylitis.

He said that I should think of myself as "basically healthy, but with some kind of inflammatory disease." He said to take NSAIDS to treat it when it flares up, and that I can continue doing physical therapy and chiropractic, but unless the pain gets to the point that I can't control it with over the counter stuff, I can just go about living my life and not worry about it.

I'm having what you might call "all the feelings" about this. He looked at some decade-old mri and CT reports and really felt that they indicated the inflammatory disease. Why didn't my primary doc or my orthopedist say anything about that 10 years ago? Were they wrong, or is he? This is basically a non-diagnosis diagnosis, so it just feels really amorphous and like it's just his opinion. Everyone else was saying that I just have biomechanical issues, but he says all my joint pain is related to this. But then why did no one see anything other than normal degenerative changes on my thorasic mri a few months ago, when that has hurt every day for 15 years?

I'm just sad and angry and frustrated and confused and then angry again and then crying again. I'm trying to remember that it's not that bad a diagnosis - he said this rarely causes disability in females and I don't need to limit my activities in any way. So why am I so upset????

I guess I'm just looking for some people who can understand how crazy-making this is, and maybe reassure me that even if this is a form of arthritis, it's going to be okay.

Also, I'm going to ask my primary to suggest a rheumatologist for a secondition opinion...any specific questions you would suggest I ask?

Thanks.

Beth

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So sorry to see how this diagnosis has been so difficult to adjust to. It is a shock to know I admit. I can offer a few ways to help you cope.

things that helped me thru was asking for help from my GP. I was given a excellent physio therapy & councellor to help me strengthen muscle near and around diagnosed area of arthritis as well as coping strategies.

antidepressants helped a great deal. A depression anxiety can slow down our systems and lack of blood and oxygen to damaged areas can cause more pain. That was a very important step for me. I found I had to be proactive my own advocate and research what was near my area to help keep my life on track and as pain free as possible.

Also my rhumy stared me on biological drugs until we found one that worked for me and it really helped slow down the progression of this disease.i have had this disease for 15 years.

My favorite form of exercise was water therapy the water resistance was gentle and helped me a great deal. Don't forget pet therapy. If you have a pet or two you have all the smiles you need! 

Many heeling blessings sent your way! 

 

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If the disease is inflammatory there are ways to help reduce inflammation in the body.  Diet is most important.  A lot of us find it helps to cut back or even give up refined carbohydrates and sugar, including soft drinks even artificial sweeteners.  Eating a lot of healthy vegetables, nuts, things with good fats in them, is also good.  I have heard a lot of people take turmeric or curcumin in some form.  I drink tea made with grated fresh ginger.  None of this is an instant cure, of course, but you may find over time that you start to feel better.  And you could consider taking up something like tai chi or qi gong which are known to help balance energies in the body.  Good luck!

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Thanks so much. I was thinking maybe I should go talk to my gp, and this confirms it.

Hey, here's a question maybe you can answer: WHT does strengthening the muscles around the joint help? I'm already doing physical therapy, but I don't really understand why it would help if the problem is inflammation and not something biomechanical.

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Thanks for the info! I was just walking along earlier this evening thinking that I had read sone thing about diet and inflammation - good to hear that it can be helpful. Thanks for all the good suggestions - I have a lother of homework to do!

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oh Beth, by all means you need to be seen by a rheumatologist. More than 100 different forms of arthritis exist ( http://www.arthritis.org/about-arthritis/types/) I would venture to say that each person with arthritis went through a very long, deeply aggravating, protracted time before diagnosis. I hear your frustration. I hear your pain. I know you are ready to throw the towel in

You will meet several remarkable people in these discussions. We support each other by sharing our experiences. We learn, we complain, we laugh, we live well despite having disease in our bodies.

Variant of rheumatoid arthritis is a true diagnosis...the question is, which variant?

So, for the moment let us settle on that you have arthritis. Exercise is very important...especially range of motion exercises. Ask your physician for a physical therapy referral. And ask your PT about posture.

Posture is critical for those of us with arthritis. Poor posture standing, sitting, in any position will promote pain. Rest not to be confused with sleep) reduces pain. Deep, peaceful sleep reduces pain. Belly laughs reduce pain.

Pain...yes NSAIDs reduce inflammation...just be sure to eat something before you take them. You may also consider acetaminophen 500 mg taken no closer than every 6 hours because you do not want to cause liver damage.

Perhaps you are unaware that all of the NSAIDs you purchase today without a prescription I purchased decades ago with a prescription! So please don't think that because a medication does not require a prescription it is just play pills.

It would be wrong for any physician to prescribe DMARDs & biologics without first pinpointing which variant of rheumatoid arthritis you have.

I speak from the standpoint of 54 years of joyful living despite having juvenile rheumatoid...I was 11. I was yelled at for being a baby, I was told that I was a hypochondriac, the school was told that nothing was wrong with me, You just want attention...yada yada yada

You have the courage to win your fight.....I like to cry in the shower, just saying

Stick with us and I just might share some of the giggles I have had just because I have juvenile rheumatoid.

It is going to be okay

Hugs

judith

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Hi Beth

My post includes one link....I am sure the moderator will put my post through shortly.

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Strengthening your muscles supports your joints.  Some years ago I turned up at my hospital emergency department thinking I might be having a stroke.  I had a numb sensation down my left side.  After running all the tests I was declared healthy.  My doctor said that left only one thing, my spine was pinching a nerve or something, and the way to treat that was to strengthen the muscles which support the spine.  I had periodically complained about back pain over the years.  So off to the physiotherapist I went and have religiously done back exercises ever since.  I have osteoarthritis in lower spine and neck, and developing it in facet joints or what ever they are, all along the spine.  But thankfully the physio has worked and I am still mobile and almost always free of back pain.  If my back every does bother me I carry on with the exercises and it clears up quickly.  I remember one time long before this "stroke" episode I had strained my back - wrapping Christmas presents for my children - and it was at least a year before my back felt good again.  That sort of thing never happens now.

So, to make this long story short, strengthening you muscles is good for your joints, inflammation or not.

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Morning Beth; I, too, am confused (so no wonder you are).  When the Rhuemy said "a Rhuematoid Variant Arthrites", what Exactly did he mean?  Is it Rhuematoid Arthrites, or Osteo-arthrites with some Rhuematoid arthrites thrown in as well?  I don't quite get this;  if it is Rhuematoid, then you should be having particular treatment for the Rhuematoid (and usually NSAIDs are not enough for Rhuematoid).  if Osteo, then yes, NSAIDs do help ....but the difference is that one is "an inflammatory process of the joints, and is very painful", where Osteo, is more of a "wearing away of the joints/cartilage etc". 

​I feel that I would be "clarifying" with your GP, first, and then discussing what treatment/s   he/she suggests following on from the Rhuematologist's report?  Otherwise, seek another appt with another Rhuematologist, and have it clarified, before starting any permanent treatment??   Physio is beneficial for both (and especially Hydro-therapy).

​Let us/me know what you come up with, and then we may be able to follow through with more definitive answers??   Am sorry if I have not grasped the situation fully; or appear stupid?                  Bron

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You folks are awesome. Thank you!!

I'm going to get a second opinion with another rheumatologist. It'll be awhile before I can get in, but that's okay. Happily, I an already in PT.

This rheumatologist was very nice, but he seemed to be changing his diagnosis mid-appointment. That fair, since I brought in the results of some old scans, so he had new info. But it still send iffy to me. He made that rheumatoid variant diagnosis. Then he said spondylo arthropothy. Then he said it wouldn't be absurd to call it ankylosing spondylitis. But I tested negative for RA, and when I saw the results of the MRI he ordered, they specifically did to consider something *other than* spondylo arthropothy. It just seemed like a very thin line, and I won't stop looking

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Eek, posted too early! I won't stop looking until I get an answer that I feel confident about. It's a huge help to know you all are here when I have those down moments that we all go through. Thanks.

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They need to do some fresh x-rays, etc. Of your body and new blood work. I was diagnosed with RA 5 year's ago and it only bothered me a lil in my foot. It hit me kast year and it's taking me out fast and it won't let up. So ye, you need to find a doc who cares enough to

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It cut me off, but don't wait for more damage to be done because it really sucks.👍

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I like your game plan!

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a rheumatologist is the best idea