hi there! I'm Rosie. I'm 35 yrs old and live in South Wales, UK.
I'm worried i may have RA. My mother suffers from it. I've been having a lot of pain in my fingers, hands and wrists for a few yrs now but over the past year, its been getting worse. The pain from my hands seems to go up into my forearms. Also my ankles have started to be agony and my left foot and leg swells up to mammoth proportions. I feel like death warmed up most of the time and seem constantly tired. Even when i've taken painkillers, it feels like something is 'gnawing' away inside at my bones. I also suffer from hypermobility syndrome ( double jointed ) and psoriasis. Both can equally be the cause of my pain
I'm estranged from my mother so i cant ask her for advice on this so i would really appreciate any feedback. I've made an appt with my GP to see if i can get referred to a Rheumy.
Thanks!
Hi and welcome to the forum. You've come to the right 'place'. We all have the symptoms you are talking about and everyone will be glad you are seeing doc's about this. Mine pain started in my feet, then 'creeped' into my hands. It has been 15 years , for me, but I didn't seek treatment for 5 years, so I have damage in my hands and feet! I'm glad you are starting early to look into this. You shouldn't have tht much pain. There are so many new RA specific drugs, and regular pain meds don't work to stop this 'stuff'. Please keep us informed aabout your appointment. we want to hear from you. Lynda
hi there
thanks for the welcome!
I've been searching the net for a message board so i'm so glad i stumbled on this one! Will let you know how i get on. The NHS being as it is tho, i doubt i'll get a consultant appt any time soon...
thanks again for the welcome!
Hi,i'm a newbie poster too tho ive been a lurker for quite some time. i have symptoms of ra too but have not been dxed yet.it seems to run in my family and i was hoping to get insight here to the genetic link.
Ive had fibro, gout and spasms for twenty yrs or so and am very pre-menopausal. Just wondering if that has anything to do with my sudden achey bones,stiffer than usual neck,back,and legs,and all over fatigue. My bones seem to throb from deep inside at times and I feel as like my legs are going to give out from under me. I hate to be a whiner to my family all the time so reading the numeorous posts on fatigue pain, and depression, really has helped me see its not just me. My hands and feet hurt sometimes and prednisone does help but i hate to take it,makes me feel sad and hungry,not a good combo
I do not want to end up like my aunt and grandmother. By middle age my aunt had so many joint replacements we called her the tin man in a loving way of course. She is in a nursing home now completely bedridden
Hi Rosie -
Have you had both your kidney's and heart tested? That left leg swelling up really worries me. My left ankle used to swell - but your's sounds 'bigger'. Can you get an appointment to an Internal Med doc too?
Hey Moana -
There is a definite link from hormones to these diseases. Many people report the onset to be immediately after childbirth or just around menapause? Can you nap during the day at all. Just getting sleep may ease a lot of your symptoms - it's when our bodies do the most healing. Also - are you sure you have gout? I was tested for uric acid levels because my dad had it and then found out that they have to get fluid from the joint to be sure. Lucky me, got a new doc in training who ground that needle in. Anyway, I had no crystals in the fluid. The reason I'm asking is one of my docs told me it's almost impossible for women to get gout. I never verified that and if you've been lurking for a bit, you know none of my doctors were rocket scientists. :-)
Pip
Wow Rosie,it does sound like pre-menopause may have something to do with the onset of our symptoms doesn't it. I hate to say i am glad to share this with anyone but i guess misery does love company
The other week my legs ached so bad deep inside that i thought i had a blood clot. i should have gone then to the dr. but i didn't. From reading the posts here i am just putting off the inevitable by not going. i have great ins. so i have no excuse. i really am tired of this pain and fatigue and and i don't think this is going away and i don't want all the joint damage so many have here.Gosh i wonder if i all ready do?
no i havent had my kidneys or heart tested. My dad is in renal failure and is awaiting a transplant. He's had one kidney removed and the other is very diseased. He's on dialysis. My left leg and foot goes up and down like a yoyo. I also have a strange sensation ' inside'.. like a cold numb sort of feeling.
Maybe it might be worth asking my GP whilst i'm there about it. They didnt seem to know what was causing my swelling when i went to the ER the other week.
Thanks for the advice.
[QUOTE=moana]Wow Rosie,it does sound like pre-menopause may have something to do with the onset of our symptoms doesn't it. I hate to say i am glad to share this with anyone but i guess misery does love company
The other week my legs ached so bad deep inside that i thought i had a blood clot. i should have gone then to the dr. but i didn't. From reading the posts here i am just putting off the inevitable by not going. i have great ins. so i have no excuse. i really am tired of this pain and fatigue and and i don't think this is going away and i don't want all the joint damage so many have here.Gosh i wonder if i all ready do?
[/QUOTE]
thats exactly what i thought! I thought i had DVT as my mother and gran have had it! I was sent to the ER to have a scan but it was thankfully negative.
I really hope you get your pain sorted out soon, sounds like you're going through it hun.
Good luck! xx
Do you know what caused your pops kidney disease? Mamouth size doesn't sound right, you know? What did the ER people say?
Pip
Thanks for the quick response PipMy first time in the ER they gave me 2 shots of morphine which didn't touch the pain. PRA comes in attacks. Mine usually lasted a few days - then -poof - gone! Just in time to see a doc who says there's nothing there. Duh!
It will eventually go to all the time - but the attacks and the asymetrical nature of them is what distinguishes it from 'regular' RA. That and we do not necessarily get joint damage. We get pain levels off the charts tho.
Pip
Oh My Gosh Pip! I just read the article and am just dumbfounded! I have never heard of this and it could be me writing the article! This has been happening to me for over 20yrs and I never suspected it could be just one condition. I have had gout? 4 times, bursitis? in the shoulders 3 times,tennis elbow? 3 or 4 times, back spasms? too many too count,dx'ed with costo? at 19 yrs old for chest pain, cluster headaches for 15 yrs,extreme hip pain for about 4 years, and the list goes on and on... but it used to be only a few days at a time and be gone, sometimes to never return. like the tennis elbow, I had it for a few months years ago and haven't had it since. I've had several cortizone shots in my joints and back and they've helped, plus physical therapy several times, pain meds, massage and water therapy, nerve blocks, anti inflammatory drugs etc.. The pain was unbearable at the time but I would go months to years in between without any pain to speak of. Now, at close to 45 yrs old I'm having more constant pain and all these 'itises in several places at one time and just so tired, physically and mentally. I will print this article off and take it to my dr. when I go in Aug. Maybe it isn't even fibro after all. Thank you so much for this info and I will let you know what I find out in a few weeks.[QUOTE=Pip!]
Do you know what caused your pops kidney disease? Mamouth size doesn't sound right, you know? What did the ER people say?
Pip
[/QUOTE]
years of uncontrollable high blood pressure caused his kidneys to pack up.
Maybe i might've exagerated slightly with 'mammoth'
Sorry you're having pain, but glad you found this board!
Have you checked out "pseudogout" since gout is a men's desease? Pseudogout has the same symptoms but instead of uric acid they are calcium chrystals. I have it in my knees.
Thank you for the welcome Kweenb and for the tip marianne, will google pseudogout, happy to have found this message board,so easy to navigate
And your BP is? Just checking. I know the left leg thing as for some bizarre reason my right was never effected so it can happen just...be sure OK that its not something else.
Marianne -
I forgot about the pseudogout! Yep, it's another thing they can check by getting some crystals out. I didn't have it tho.
Moana -
PRA is an extremely rare disease which gets misdiagnosed a lot. The good news is if you have to have one of these AI diseases, this is the one to want. (Yes, I know it's crazy to say that) but there's something in our bodies working like heck to try and beat the infection off. It's failing. But it's trying. I'd love to know the results of your blood tests as I'm trying in my limited non-scientific way to find some patterns. You might also want to run a search here on 'Palindromic' as I've posted about it a few times.
And Newbies - please check out www.Roadback.org They saved my life.
Pip
I just want to say hi to glitter and moana! Sorry you haveto be here but glad you found us!
Glitter....RA does run in my family. PRA sounds right up your alley. Thanks Pip for posting that.
Thanks, Gramma!
Moana, also, that was just the description page. The home page has links to a forum where you can meet others like us. That BB is really new; like under 18 months on line. When I was diagnosed last March I didn't know they were there - a friend found them for me in September I think.
Pip
Hi Glitter and Moana, welcome to the board. I have been away so i have mssed so much on here.I'm not sure how I missed this post but it sounds like you've already gotten a lot of great input. Not much I can add...just a welcome.
Peace & Love...Neasy