Waiting for a diagnosis

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ozrkcrafter
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/5/2010 1:55 PM (GMT -7)   
 Everyone!

I am a 55 year old woman who has had a fairly active life up until last September. The doctors are still trying to figure out what is wrong with me.
I am beginning to have some suspicions that my problem may be RA but only because of some of the articles I have been reading. My husband and I have been so healthy that we didn't even have a GP until this past year.

Can someone describe the pain from RA. Everything I have read describes the joints but mine feels more like the muscle that originates in the elbow. Is it pain or more like a deep ache? Does RA make your muscles hurt? Some days it feels more like a deep ache, some days pain. There are even times when there is a sharp pain that almost feels like someone is sticking me. Are any of these symptoms part of RA?

It doesn't hurt to push on my elbows but there are days I have a hard time picking up a cup of coffee or opening the shampoo bottle. I go outside and work in the garden or pick up my 1 yr old grandson I end up paying for it. Some days it feels like my hands are so weak. Everything I have read about RA says that there is redness and swelling at the joints which I do not have. It also talks about nodules but I don't have those either. I do have arthritis in my fingers and back.

The pain started in my right thumb and extended up into my elbow. Nothing seemed to make the pain/ache go away. My GP thought it might be carpal and had me wear a brace for 6 weeks. That didn't help at all. So he sent me to a neurologist. After running tests, the tests came back that it wasn't carpal tunnel. The neurologist also told me that my pain didn't make any sense. My husband went with me and we both thought that the neurologist thought I was lying about my symptoms. My GP then sent me to an ortho. He took Xrays of my hand and elbow and neck. He said that the thumb problem was arthritis but the elbow looked fine and the neck had 3 bad discs but a surgeon wouldn't operate because they weren't that bad. He gave me a steroid injection in the thumb and it relieved the pain/ache in the thumb and seemed to be helping my elbow as well for a coupld of weeks. He also had me doing traction at home which didn't help any either. It wasn't long after that when the left elbow began to bother me as well. I thought it was simply that I was using it more because of the pain in the other elbow or the traction was causing it.

At this point the ortho sent me to a neurosurgeon. He put me through all the paces and then said that even though the discs were protruding they were not causing the problems in my elbows and hands. The neurosurgeon was wonderful and spent a lot of time talking to me. He suggested going to a rhuematologist. I am still waiting for that appt which will be on May 17th.

I am so frustrated. The Ortho Dr. has me on tramadol (100mg ever 4-6 hours) and hydrocodone neither of which seem to be doing much good. I have tried muscle relaxers, heat, ice etc and nothing is helping.

I am so frustrated.




wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2325
   Posted 5/5/2010 7:19 PM (GMT -7)   
Gee ozrk- RA is a crazy disease with a lot of different types of pain. It would be hard to tell from what you are saying. My onset pain was so bad and so relentless I wanted to die. Once I got on the right med combo it calmed down and now I may have aches, throbs, stabbing, burning, shooting etc. pain at different times during the day. My hands and wrists have always been most affected followed by my ankles and feet. Sometimes I do have pain in places that don't seem to be joints but RA affects tendons and then the muscles are affected too. I am sero negative but I got my dx because I had a severe onset and had the red, hot joints, severe symmetrical pain in all joints, lots of swelling, stiffness that last way more than an hr. in the morning, prednisone helped with the symptoms and I forget all what else.
have you had any blood work? Although I am RF negative I did have very high inflammation markers. Going to a rheumatologist is a very good idea. Let us know how you make out. All the best to you.

ozrkcrafter
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/6/2010 8:24 AM (GMT -7)   
I have not had any blood work done.  The pain you described in your post is what I feel in my arms, forearms and now my wrists. Like you it feels like it is in places that are not joints.  I do experience stiffness and pain for more than an hour in the morning and sometimes it wakes me up in the early morning hours.  I do not have any throbbing though. Doing any housework is a problem as well as lifting the coffee pot or a gallon of milk. The Ortho Dr and the Neurosurgeon mentioned fibromyalgia but no one has done anything to test for this either.  Some of my friends have fibro and I honestly do not think that is what it is what it is.  As much as I don't care for Doctors, I am really looking forward to going to the rhuematologist and hopefully get a diagnosis.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/12/2010 6:47 PM (GMT -7)   
Ozr-that sounds an awful lot like nerve compression rather then RA. Either way I start with a Rhuematologist. I have had RA and a nerve compression syndrome the ache and weakness in the muscles sounds like a nerve problem.
MRI of the spine, EMG-would confirm or rule out.

Abol76
Regular Member


Date Joined Mar 2010
Total Posts : 74
   Posted 5/12/2010 10:13 PM (GMT -7)   
Hi ozkCrafter, just reading above it doesn't sound like RA but I could be wrong. Just a bit baffled as to why ur seeing brain dr's (Neuro). Have they considered tendonitis? I hope you get some answers but maybe blood work is the next step. Good luck and Go well X
Arthritis, GORD, IBS, PCOS, Neurosarcoid, Hypothyroidism, psoriasis, mental health issues, BIH, high blood pressure and high cholesterol. . . Methotrexate injections, folic acid, Prednisolone, Alendronic Acid, Adcal D3, Morphine, Lansoprazole, Domperidone, Norethisterone, Metformin, Levothyroxine, Amitriptyline, Sertraline/lustral/Zoloft, buspirone/buspar, Carbamazapine/Tegratol, Risperidone/Risperdal, Melatonin, Lisinopril, Atorvastatin ". . . but hey, Tomorrow is another day!" :-)


ozrkcrafter
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/19/2010 2:10 PM (GMT -7)   
The MRI showed 3 bad discs in my neck.  After traction, braces, etc.  the Ortho sent me to a neurosurgeon (frankly I don't think he knew what to do with me at this point).  He said he really didn't think the discs were bulging enough to cause my problem. The neurosurgeon said the same thing.  The neuro is the one who referred me to the RA.  I had the appt with the Rhuematologist last Monday and he says it isn't carpal tunnel. He gave me a shot in the elbow which has helped me to be able to lift things and use my arm a little more but I still have pain. The RA pressed on the pressure points to see if it is fibromyalgia, which it isn't.  After running me throught some general arm movements, etc. he sent me to the hospital again for Xrays on my elbows and hands.  I also had alot of blood drawn while I was there.  I commented on the fact that they were filling about 7-8 vials of blood.  The technician said there were a lot of things checked on my orders.  The RA never mentioned an EMG.  I go back in 3 weeks for the results.  He did ask a lot of questions about whether rhuematoid ran in the family.  As far as I know, no one in the immediate family has ever had it. So...........it's back to the waiting game.  

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/19/2010 5:19 PM (GMT -7)   
Hi Ozrkcrafter, waiting is something we're good at with RA or sero negative we seem to be always waiting for something! Sero negative arthritis can affect tendons and have strange symptoms, the morning stiffness is very typical but lots of auto immune diseases can have effects on your joints. Your rheumy is the best person to hopefully work it all out for you.

Heat helps alot, so get yourself a heat pack and wrap up those elbows or hands to bring some relief. If the cortisone worked for a couple of weeks theres obviously some sort of inflammation going on, hopefully the rheumy will give you a course of treatment to get it under control. Best wishes, golitho

Joni James
New Member


Date Joined May 2010
Total Posts : 9
   Posted 5/22/2010 5:29 AM (GMT -7)   
From what you describe, I would think a rheumatologist would suspect Fibromyalgia before RA but it may be either or both. I have both. I test sero negative for the RA Factor, which about a third of people with RA do from what I have read, however I test positive on the CCP test. If you test positive on the CCP test, you have about a 99% chance of having RA. I would ask for that test so you can get a concrete, rather than sero neg, diagnosis if you have it. Everyone seems to treat my condition with more respect now that I can "prove it" and it stops me from questioning myself. There are no blood test for Fibro but you can find the list of symptoms and trigger points by Googling. A deep muscle pain that does not go away is the most common symptom. Good luck and I hope you have something temporary!

ozrkcrafter
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/26/2010 9:48 AM (GMT -7)   
I thought fibromyalgia affected the entire body and left you fatiqued all the time.  My hands, arms and elbows are really the only place I am having problems. The RA checked the tender points for fibromyalgia and they did not cause me any pain.  My next appt. is June 11 to go over all the lab work. 

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/26/2010 3:54 PM (GMT -7)   
Well at least its not too long to wait, can't it feel like forever? I hate that ever time I see my rheumy its wait to see how this works , wait to come off this med, wait for these tests... need I go on.

Just keep ranting here, our bodies are amazing things but when they let you down it can be so worrying. The what next is the part I hate, keep us up to date, golitho

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 5/26/2010 7:40 PM (GMT -7)   
ozrkrafter my Fibro didn't involve my entire body when it started. Just the back of my neck, left shoulder, left arm, and left breast. But I too am being tested for RA. which could be there as well because of the pain I get a sharp pain in my right elbow deep inside and in my right ankle deep inside. Joints on my right hand hurt but have been told even that could be Fibro. there are days I can't open a jar or twist a cap. I was also told that Fibro meds don't work on RA which is why I can feel this pain I guess. My follow up appointment is next week and she is rechecking me for Lupus and RA. I'm a mess right now and my face is a fright. Seems everything is just hitting me at once OR... I finally got fed up and decided to get it taken care of. I'm stubborn as a mule so even seeing a doc was a challenge for me. I was the one that doesn't get sick now it seems that's all I do.
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