Hello everyone. I can see there there are many very knowledgeable RA sufferers on this website and I would be really grateful for anyone's thougts on my story below. I'm probably just in the Denial phase right now, but I do seem to be coming at this from a different perspective to some of you (many of you aren't getting the diagnosis you think exists, but I don't want the diagnosis I have been given !).
I gave birth 15 weeks ago. I had a very healthy pregnancy. I am a very healthy and fit person and I even carried on going to aerobics / yoga etc right through to 37 weeks. Giving birth did not go so well, however. Induction led onto emergency cAesarian due to fetal distress, followed a couple of weeks later by an infection in the c section wound leading to the wound busting open.
6 weeks after birth my hands and feet started to ache. Balls of feet and pads of palms. Initially I put it down to starting exercise too soon after birth. But when things did not improve, I went to see a GP at 8 weeks post birth. I had stiffness every morning which would gradually ease out to a general bruised feeling, and stiffness would set back in again in the evenings after I had sat down. It was difficult looking after baby because it was painful to lift him and walk down stairs.
GP carried out a blood test and squeezed my hands and feet in certain places and asked if it hurt. It didn't hurt where he squeezed. Blood tests all came back normal. All inflammatory markers were normal. I had no other symptoms other than the stiff hands and feet. No tiredness. No feeling unwell.
I insisted something was wrong and because my thyroid has been playing up since giving birth (historically I was mildly hypo thyroid and readings have swung hyper thryroid since giving birth), I personally suspected that I either had post partum thyroiditis or post pregnancy hormones were in a state of flux, I asked to be referred to an endocrinologist. GP refused and said if anything I should first see a rheumatologist to rule that out, so he would refer me. He said NHS waiting list was 16 / 17 weeks so I should take ibuprofen until then.
I went private and got an appt within a week. The rheumatologist ordered further blood tests and ultrasound. The ultrasound showed no inflammation or damage to the joints. I only had inflammation in the tendon sheaths which the radiographer said often happened with rsi injuries. The blood result however was another matter. They came back as strongly positive for both rheumatoid factor and anti ccp. The rheumatologist also got me to squeeze a rubber ball attached to a pressure gauge to see what my squeeze strength was, which he said was pathetic. So he has concluded that I might have the very beginnings of ra and that we should begin treatment immediately, within the "window of opportunity". I am currently 9 weeks post beginnings of the pain (never had any joint / tendon pain before). So I took my first dose of 10mg methotrexate last night (no side effects so far by the way). The plan is to increase the meth dose every two weeks and see him again in 12 weeks, this time back on the Nhs.
At my appt, I said to the rheumatologist, look, I am super fit and healthy, my family has great genes, no-one ever feels I'll. I don't feel ill. I only have sore hands and feet. Is it possible that this is just some form of temporary reactive arthritis caused by the birth, pregnancy, the infection in my c section wound post birth etc. He smiled, sat back in his chair and said "I cannot ignore these blood test results, I'd be failing you if I did, so my advice has to be to start methotrexate". I understand why he said what he said, and I accept the sense in taking a conservative approach, but he didn't answer my question, I now realise.
It's difficult for me to carry out much research whilst home on maternity leave with a 15 week old baby. Thoughts I have are:
- if anti ccp and rf are positive, is it still possible that it could be something else, or is that really conclusive?
- could post pregnancy hormone fluctuations be mimicking these ra results. I have seen thousands of posts on the Internet by women post pregnancy who got sore hands and feet for several months after giving birth, and then after 6-9 months the pain wore off. Loads of people are saying this to me, even one of the GPs.
- could it still be a temporary reactive arthritis triggered by the c section infection, even though the rf and anti ccp are positive.
I feel so well. Even with a 15 week old baby I don't feel tired. I find it very difficult right now to accept this potential diagnosis given how I feel and given my family history.
Sorry for the long post. I'd be grateful for any random thoughts.