this is my first blog post on here and I think I just need some reassurance.
My pain started 2 years ago after the birth of my third son. I would wake in the night with pain in my hips, I didn't think much of it until this last summer. I had spent a sunny day cutting the grass when i noticed the thumb on my right hand was red and swollen, it eventually subsided but not totally and since then this thumb has remained fat!! (You can no longer see the ligament over the top of the bottom knuckle) It swells when i vacuum too. Then over the summer on my return from work I would sit down to watch TV in the evening and then struggle to get up, my hips agony, and a real intense burning in them. I would have to stop three times walking up the two flights of stairs to bed. In July this burning in my hips was every night, so I went to the doctor. She did my bloods and RF factor was"borderline positive".
Over the summer holidays my hips improved (I am a teacher so wasn't working and on my feet all day). I had my bloods redone in September again "borderline positive" and was prescribed Diclofenac . Over the first half of term i was fine, little pain and then at the beginning of November things just seemed to escalate. I came home from work with burning in my right knee, by the following day it was in my left knee and my hips. Over the next two weeks it moved to my wrists (stiff and tight), my fingers (shooting pain in the knuckles) and my right shoulder(throbbing). My doctor put me on Etodolac 600mg which helps a lot.In December I experienced pain at the base of my toes and in my ankle on my right foot.
I cannot see any swelling, except at the base of my thumb and two of my knuckles, I just know it hurts and is a pain that frequently brings tears to my eyes. As for the fatigue, I have never known anything like it. I struggle to stay awake, if I sit on the sofa I will be asleep in minutes! My mood is all over the place and I am scared for the boys (9, 4 and 2) and I am petrified that it is RA. I see the Rheumy on the 23rd January and have a feeling I know what the answer will be!!
Any help/support/advice would be really appreciated.
Elly.
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ellybw
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Don't have any answers as such but I've just been out most of the evening, met lots of new people and, for the first time in 2 years, didn't feel even the slightest need or inclination to explain any signs of disability etc. because there weren't any! (Well, a bit of a limp but so what.) I was very bad with RA once but I seem to be getting better and better so just to say, don't be scared if it is RA that you have. I'm far from being the only person who has done extremely well on the DMARDs & the way things can turn around is often quite astonishing. So whatever diagnosis you might get on the 23rd, it could be the beginning of a much, much better chapter. Hang on in there & good luck to you! Luce x
Oh Elly, this is a really horrible period before you are diagnosed.
If it is ra the good thing is that there is some really good drugs now that can modify the disease and prevent it doing more damage to your joints and more importantly there is fantastic research going on so there will be more choice in how it is treated.
I was diagnosed about 2 years ago and it was a mixture of relief and fear when i was told as i had years of ad hoc pains and tiredness where i knew there was something wrong. Your children are younger than mine - i have two girls 11 and 7 now and I was so devestated, particularly with things like not being able to tie up their hair or being alert enough to help them with their homework. I also work so was so scared about that as well. My mood was also awful, particularly because i was so apprehensive and worried and afraid for the future.
For the latter i did get antidepressants and they helped. The first year after being diagnosed they say is the most difficult (and I can agree with that) trying to get the right medication for you and trying to come to terms with it.
I think what i am trying to say is that even if it is ra, you should get a good team of people looking after you, advising you and medicating you so that you can continue life as near normal as possible. Please keep blogging with any questions or things that you are concerned about. There is a lot of supportive people on here (quite a number of teachers) who will be able to help you.
You poor thing. Count the days down until your appointment, and meanwhile be very kind to yourself. Get the strongest painkillers your GP will give you and stay in bed or on the sofa and rest. I find heat helps, and swear by an electric blanket for the pain in my hips and feet. Feed your boys easy meals and let them watch loads of TV - this phase won't last forever. Call in all the help you can from family and friends.
You are not alone in the fatigue and fluctuating mood, which are all part of the illness. If the consultant diagnoses that it is RA s/he will be able to give you steroids which should give you some relief from your symptoms quite quickly, as well as the longer term medications which should bring the disease under control, though that can take quite a bit longer. Meanwhile, get yourself a bit informed but don't scare yourself on the internet.
Three years ago exactly I was where you are, and although I still get exhausted and bits of me ache and are stiff, I haven't had the agonising pain for ages, and I can ride a horse again.
Hang on in there.
Dotty x
Hi Elly, I think Mads and Wooly have already expressed much of my own feelings about the RA journey. I agree that this limbo period with uncertainty hanging over you was the worst bit for me too. If it is RA then you will be put on powerful but very effective drugs called DMARDs and things will improve a hundred fold for you probably.
I may be wrong but I believe RA usually starts in the smaller joints and effects the bigger joints such as the hips later on - although I did have terrible pain in my knees at the start. You can get secondary Osteoarthritis in the hips too and it's quite possible to have a mixture of both. Once you are diagnosed on the right medication you can look forward to things improving a huge amount.
I was in my late forties when I was diagnosed after about 9 months of roving pain - settling in knees for a few days, then ankles, then toes, shoulders, elbows then wrists (a lot in wrists) and most constant of all in my fingers and knuckles. I had three teenage sons who were not the same handful as young ones but who I worried about a lot nevertheless (a parent's lot) and who were too old to adapt to helping me out much. The knuckles tend to be the give away for many rheumatologists but it sounds as if you will have your problems caught good and early and may end up in remission - where I believe I am now thanks to the drugs.
I suggest that If you have swelling then photograph it and print off some images to show the consultant just in case you are having a good day re swelling. Also it might help if you know what your inflammatory markers are the week of the appointment (ESR and CRP) and have them printed off to show him or her. If you are diagnosed it's a good idea to have done as much research as possible into the various medications - preferably on the NRAS site and on here so as not to scare yourself silly! It does help to be well informed with inflammatory arthritis's. Good lucky with your appointment and let us know how you get on please.
Mine started as nagging pain in my hips (thought it was osteo and just part of geting older, so ignored it) then once the RA "proper" started it was very quickly in my hips, and they have been problematic ever since. It's unusual, but it does happen.
You sound so tired and pained and worried and I can empathise with that as that is how I felt when I first got symptoms 16 months ago.
I found that as the ladies say above get your information together, take photos and write down a diary of your pain. The doctors have a very short time to see each patient and i got worried trying to tell them everything and then would forget to mention something important! I now take a list of problems or questions with me and if possible I take a friend or family with me as I have found they can back you up and hear things you missed.
Whatever the diagnosis you now need to look after yourself, sleep,when you need, take your painkillers, and wash your hands regularly( I used Hand gel) to prevent yourself getting colds and flu.
Some people find warm hand packs helpful , other find cold packs better when they are inflamed.
Also my biggest tip, I know you work but if you can phone the Nras helpline say at lunchtime, they are amazing and really got me through the initial stages when I didn't really know what was wrong. Keep coming on as the people here are amazing and helped me loads. Lots of luck Axx
Thanks for all of your replies. I haven't gone back to work this week as am fighting a cold/flu thing that the boys all had over Xmas, so am trying to rest up as much as possible.
The pain started in my thumb about ten years ago, but in this last year has got worse and spread. I have already thought about writing everything down, so I think I will get on with that before my appointment in two weeks.
As others have said, waiting for a diagnosis can be an anxious period. I can understand your concern about a possible diagnosis of RA, but even if it is diagnosed as this, it can be a very treatable condition these days. I think the way to look at it is that you have something wrong now and have had for some time, so a diagnosis of RA or anything else is just giving that condition a name, and this can be a positive thing, as when you know what it is you can be treated for it and will hopefully start to feel better.
The following article from our website, which looks at what to expect from the initial hospital consultations might be of interest:
You are also obviously very welcome to call our helpline at any point if you have questions before or after diagnosis. Our number is 0800 298 7650 and we are available Mon-Fri 9.30-4.30.
So sorry for your pain and fear. It is a shock to learn that one has a chronic illness, and I totally empathise about the fatigue and pain. But, the modern drugs are so much more effective. For many people, the RA can be so well controlled that they hardly know they have it. It can take a while to find the right cocktail of drugs , but the sooner you get started on them, the better. Good luck.
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