Hi. I don't know if you remember but my wife Julie posted on this forum at the beginning of August because she was frightened that she had rheumatoid arthritis. She was in such a state she was too scared to check for replies, however I checked for her and told her what you said and how nice, caring and helpful you all were. I've got a bit of an update and was really hoping you could shed some light on some things for me - I'll get her on this forum eventually but right now she's too frightened to even speak to her friends on the phone. Anyway, here goes and thanks for your patience.
1. How the pain started.
The pain first started in her wrists when she was about 4 months pregnant. At first it was only in one wrist for a couple of days then it jumped to the other wrist for a couple of days. It did this for a few weeks then disappeared. Her wrist felt 'tight' sore to touch and very sore to moved, however it wasn't warm or swollen at all. After the pain left, it her wrist occassionally felt 'looser' and cracked and crunched a bit. She didn't think much of it because she thought it was carple tunnel syndrome.
2. Pain now.
She finished breastfeeding at the beginning of June and on the 18th June the pain reappeared in her wrist and disappeared again after 2/3 days. A few days later it appeared in her shoulder - no heat or swelling but excrutiatingly painful to move - it disappeared after a couple of days. Then it appeared in the right shoulder, then both.
Since mid July her knees, feet and knuckle on her ring finger have been consistantly painful - not when she is at rest, only when moving, and are often tender to touch, especially in the morning. Further to this she has had migratory pain, its jumped from a shoulder to an elbow joint to a little bone in her ankle and to once side of her jaw, followed a week later by the other side - all lasting about 2/3 days. Her jaw was only painful if she moved it or touched it but she couldn't open her mouth to eat or bearly talk. She has trouble standing up from a sitting position and is in constant fear as to where the pain will strike next - incidently the migratory pain seems to jump in the evening for some reason!
What the Doc's Have Said.
She went to the Doc's for the following blood tests: ESR, RF and ANA
ESR was normal and so was ANA, however RF was very weak positive so Doctor referred her to a Rheumy but the wait was so long we went privately. He examined her - she was not in too much pain that day because the appointment was at 6pm and that's her best time of day usually. He said that there was no heat or swelling and blood tests didn't indicate RA but it might be and to wait and see. Obviously you can imagine how unhelpful that was!
on 2nd August, following your advice we went to see another Rheumatologist - who was apparently very good - again in the late afternoon. He said that there was no swelling or heat and that RF was so weak he wouldn't class it as positive and said there was NO WAY she had RA. He said she was 'pretty bendy' and diagnosed Hypermobility Syndrome. I've checked out symptoms of this and it doesn't really sound like what she's telling me - RA does. Unfortunatly because Julie was so upset about the pain she was in - the letter her Doctor sent to refer her to the rheumy mentioned that she had PN depression - which she doesn't have at all, so I'm worried that he wasn't taking her seriously.
I'm so sorry to have rambled on for so long but I really need some advice to help her because we're stuck now - we think she has RA and the Rheumy says she doesn't. Hope if you've stuck with it this long you could maybe take a stab at answering a few quick questions becuase your advice so far has been invaluable to us both.
In 'early RA' can ESR rate be normal?
does what I've described sound like RA
Can joints only be painful on movement and to touch or are they sore at rest too during early RA - do they always need to be swollen or warm?
Any ideas what we can do next? Because she had a low white cell count, the Rheumy said the might have had a viral infection which has brought on 'polyarticular?' arthritis and that in people with hypermobile joints this can go on for 2/3 months, but when I phoned him and asked him about my wife's jaw pain he said this wasn't typical and told us to go back to the GP who doesn't have a clue - we're going round in circles and Julie is almost at breaking point not knowing. Even though the Rheumy said she doesn't have RA she really thinks she does. Can anyone help?
PS. I can't thank everyone who replied enough for their support - I read everything out to Julie and I just wanted to say that she's usually a hell of a lot more talkative as you'll all probably find out! You all seem like such a lovely friendly crowd and I'm sorry to have taken up so much of your time.
Thanks so much,
David (the husband)
David; I'd first like to welcome you and Julie both to AI. I don't remember you from previous post; but Julie's story is oh so common. RA is a rather mysterious disease in some. Some of us; like my self got a positive DX on my first RD visit; and other here with the very same symptoms took years to have a doctor dx them. It may just depend on the doctor; I don't know for sure.
We have a very useful section on our boards that all of our "Vets" (Folks with a little more experience) have put together for some of our Newbie friends. I've copied and pasted below a list of criteria used to Dx RA. There's several factors involved; not just blood work. http://arthritisinsight.com/forum/forum_posts.asp?TID=517&am p;PN=2
Also study up on several of the other post in that Useful Links section and remember to hit "ALL" at the top of the page so you can see older post. Those are some of the most helpful links to someone that isn't very fimiluar with RA.
And Julie; My RA really became active after the birth of my second daughter. I honestly believe I had it for many years before that, but after the birth of my second child I really think that something in my hormones changed and brought it on full force. Much like you I had horrible pain, and not much visable symptoms. Occationally you could see swelling, in my hands and knees inparticular; but that pain in my shoulders is what finally pushed me over the egde. I could hardly lift my arms to put my shirt on....and forget drying my hair; I could barely brush it!! Gripping a tooth brush became one of the toughest chores of the day.
We know how you feel and we're here to support you. I hope that you'll come visit often. If nothing else; just read some of the post here. We often have people who post that say they have been lurking for months and it has been so helpful.
Best of luck to both of you. Julie; you're lucky to have a sweet husband like David that's so concerned for you. If you do infact have RA he's going to be such a comfort to you. It will make such a difference having him to depend on. AND David; Don't give up on her...there is treatment available that will help her lead a good life; but there will be struggles.
Hope to hear from you both again soon.
Lovie
David, Your wife symptoms sound almost exactly like mine. I have had several blood tests come up "completely normal" and some come up with numbers "off the charts". I rarely have inflammation that is noticeable. Do you have good insurance? MRIs and bone scan also helped to make my diagnosis. One indicator is if prednisone relieves the symptoms, it raises suspicion that it is ra. I think there are few of us that have the "text book" symptoms. I worry every time I get a blood test that the numbers will not show how I am feeling. The high numbers do not always correlate with how much pain I am in. I hope this helps David. You are a wonderful husband which will make all the difference in the world if your wife does have ra. I would keep pestering the doctors and getting blood tests. Get a blood test when she is in the most pain. It does seem like those are the times when it is more likely the numbers will be higher. Good luck. PS I will look at my past blood tests when I am feeling better. There was one test that many rheumatologists do not do that was conclusive that I had ra. (It was not one that you mentioned) I will let you know its name later today or tomorrow. Give your wife and baby a gentle hug.David--yes! It sounds like RA to me, too. I'm no doctor. But the bad mornings and better afternoons, the symmetry of the pains (one wrist, then the other), the onset during pregnancy.) I was very positive in all my tests, and so it was easy. But for so many others here, they were seronegative like Julie. And no--that area of pain doesn't necessarily have to be warm or swollen. Sometimes it is, sometimes it isn't. I don't know how the rheumy can say jaw pain is not common in RA.
The thing that stuns me is that it seems none of these doctors has given her anything for the pain. If I were you, I'd do this--some would suggest pain meds first. I won't. How about if you call or visit the GP. Tell him your suspicion and basically challenge him to help you in your quest. Ask him to prescribe a medrol pack. (This is six-day course of prednisone that gives a quick and strong dose of prednisone.) If she gets relief from this in the first day or two, it would indicate--maybe prove--that she has some sort of inflammation going on. May not RA, but something. Certainly not PN depression, for crying out loud! It gives the docs a starting point for a proper diagnosis, and Julie some relief.
David, I hope you know--and Julie knows--that all of us without supportive husbands are in love with you.
Jackie
Dear David and Julie
So sorry you two are going through this.its hard being new parents and then having to face a possible illness that will affect Julie her whole life.
I remember when I was 21 I went to a dr. complaining about my stomach hurting so much.He did few tests.I had husband go with me to my last visit.He was a bit put off by that.He said my illness was due to my 3 yr. ol daughter and the stress of being a mother.Not long after that I was dx. with endometriosis.So, that just goes to show dr.'s don't know everything and when they don't have clear cut evidence they are less likely to dx. her just for malpractice reasons and insurance purposes.I know it take sometimes years to get a dx.I have yet to get one and really don't for see getting one anytime soon.My bloodwork is normal,I have some swelling but alot of joint pain,flu like symptoms.
To say she is just depressed is just a slap in the face.I hate it when dr.'s make it out like it is all in your head.
I hope you 2 have support from your famalies.You are an absolute WONDERFUL husband for doing this for her.I wish I had one just like you.Got a brother?
But seriously, keep pushing for help.I am so glad you believe her, I know that means so much to her.
take care, Sheila
David, The test that told my rheumy he was 99% certain that I have ra was CCP antibodies. My number was 297 which is very high. He said not all rheumys do that test but it is very reliable for a diagnosis. I hope this helps. This is coming from someone who hopes I have Lyme disease but my rational self believes I have ra. The damn rheumy is just so certain.I realise it must be terrible to hurt and have everything test out normal. Maybe it will just pass - some strange thing brought on by having a baby.
Try more doctors - even the best ones make mistakes.
Regarding tests, roxy is right. CCP antibodies test is important for diagnosis. You can ask for it. Mine was 385 when normal is < 20. Sed rate (95 when normal is 0-30) and Rh Factor (276 when normal is 0-20) I tell you these numbers because it's important you know Julie's numbers along with "normal" ranges--you can take that fuel with you to the next doctor. At the same time, keep in mind that you can have no high readings and still have an inflammatory disease such as RA. High numbers just make diagnosis easier.
Good luck!
DAVID....I REMEMBER JULIE'S POST VERY WELL. SHE WAS GOING THRU A VERY DIFFICULT TIME AND WAS VERY DEPRESSED. I AGREE WITH OTHERS, SHE IS VERY FORTUNATE TO HAVE YOU AND PLEASE BE VERY SUPPORTIVE TO HER DURING THIS TIME. SHE IS PROBABLY AT THE BEGINNING OF RA. HER TESTS WERE VERY SIMILAR TO MINE AND I SUFFERED FOR SEVERAL YEARS BEFORE A DIAGNOSIS. FIND A RHEUMY THAT DOES MRI'S OF HANDS IN HER OFFICE. THAT IS WHAT NAILED DOWN MY RA DIAGNOSIS...THE BONES AND JT EROSIONS IN MY HANDS. WHEN SHE IS AN PAIN AGAIN, HAVE HER BLOOD WORK DONE AGAIN, AND AS SARA ABOVE DISCUSSED, THE MEDROL PACK TAKEN FOR A WEEK, WILL GIVE HER IMMEDIATE RELIEF. IF IT DOES, IT'S PROBABLY AUTO IMMUNE ILLNESS. I HAD A BABY AT 41 AND SHORTLY AFTER STARTED HAVING THE RA SYMPTOMS...SOME BELIEVE THE HORMONES SOMEHOW AFFECT THE DISEASE. IF IT'S RA OR RELATED AUTO IMMUNE ILLNESS IT WILL HURT MORE AND MORE. HOPE YOU'LL LOOK FOR A RHEUMY WITH MRI CAPABILITY AND ASK TO TRY MEDROL PACK TO HELP WITH TEMP. PAIN RELIEF. KEEP US POSTED...WE UNDERSTAND AND DO CARE. THIS IS A WONDERFUL, SUPPORTIVE GROUP OF PEOPLE AND WE ARE ALL HERE FOR YOU AND UNDERSTAND WHAT YOU ARE GOING THRU. GIVE YOUR WIFE A BIG HUG FOR US AND POST OFTEN AND LET US KNOW HOW SHE IS DOING.Within a month of that appointment (and many tears later) I was worse. My hip was extremely painful and my knees had started to hurt. We made a private appointment. This guy was really nice and explained everything. How it is difficult to diagnose early RA if the blood tests are negative, how joint hypermobility is a cop out, how I probably didn't have RA and it was just a waiting game. I am now classified as non-specific joint pain/disorder. I have deteriorated in the last couple of months and I am due to have another appointment soon. It is a sad thing to say but I hope this time I can get some dort of diagnosis.
The key is not to panic. Yes it is frustrating, painful, depressing, tiring, all of these things. But it is important to get the diagnosis right. Symptoms of RA can be caused by many things and some of them are transient. The drugs used to treat RA can be harsh on the system, as I am sure you have read here. But even if it is RA, it is treatable. My only piece of advice I can really give you is don't give up. There is something wrong with Julie's body (just like mine) and it needs treatment. Keep hassling the doctors until you get a definative diagnosis.....that's what I am going to do. And keep logging in here.....it really does help and everyone is sooooo friendly (even when you rant on a bad day).
Hugs to Julie and you.
Niki
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