I'm 55 and recently diagnosed with RA. However, saying that, one year ago I went to my doctors to discuss my never ending problems with dealing with the menopause, but I was concerned that my fingers had changed shape small boney lumps appearing at the sides of my fingers. My doctor immediately told me it was RA. She didn't seem at all concerned and continued to discuss my menopause symptoms, I didn't give it another thought. Over the course of a year I became increasingly tired, stiff in the morning I just felt awful but assumed it was the side effects of the menopause. However 5 weeks ago without warning I woke up in intense pain around the area of the cuff in my right arm after 3 days I felt the same pain in my left arm then my right knee. I went to the doctor who didn't seem at all concerned and just prescribed some mild pain killers. However two day later on waking up i couldn't get out of bed I was in agony literally crawling my way to the bathroom it felt like someone had smashed my kneecap with a sledge hammer. I had no idea what was going on but if I'm honest I was thinking the worst scenario cancer! I went to A and E they took bloods did various tests and it came back positive so booked me into seeing a rheumatologist. That was 2 weeks ago, and since then my auto immune system has been literally attacking every joint in my body from my neck down attacking my throat, neck, elbows, fingers, the bottom of my feet, knees, wrists the lot. I have never suffered so much pain and to be quite honest the indignity of having to ask for help with everything was the worst for me. I felt vulnerable, scared, and totally alone and useless. Although my family have been fantastic I just felt so sorry for myself! Couldn't believe that I couldn't even get into or out of the bath and found the stairs a huge challenge I have my first appointment at the hospital next week. Now however, I've read and googled everything there is to know on RA, ive gone from crying feeling sad to angry about this condition and now acceptance. After all its not cancer!! I intend to be positive, change my diet look after myself and lead a healthy life. It's going to be challenging but I'm ready! I do wonder however, that if my doctor had acted more swiftly one year ago I could have been treated earlier and would have known that the symptoms I suffered over that time was not the menopause but the start of RA. I have always been fit and healthy and Xmas to me was the enjoyment of running around merry and delighted! But this Xmas was I was a zombie looking in from the outside. But hey ho! Life is short and we have to be strong and accept the challenges that we are dealt with.
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Jaxine
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Well I had a similar start to you, with the RA hitting me like a train and going from fit to bedbound in 6 weeks. And painful - yes!
However, I'm now 95% normal again. I have to take a little bit of care not to get overtired, make sure I look after myself properly amd exercise daily. And I don't have the energy I used to, but then I am also older now....
You might have to be patient as it can take some time to find the right solution for you, but chances are you'll get there.
Yes you're right! I'm obviously worried about that journey of finding the right medication that best suits me, and it certainly doesn't help that I've googled all the negative cons about certain medications. I suffer from migraines which are debilitating enough without medication making it worse! But an open and honest discussion with my consultant is what is needed.
Great to hear that you're 95 % better, gives hope and reassurance to me. Thanks for that! Just so weird how RA can hit so hard so quickly! This Xmas we had 10 for dinner and 25 for boxing day, I didt cancel just got on with it, i was shocked that my brother ( whom i told what was wrong with me) kept telling me to chill and that I looked like I was looking in from the outside! I told him yea cause I'm in more pain than you can imagine! Felt like screaming at him! I can't tell my family to Google RA it's up to them to try and want to understand but it would help me to help them to understand. My husbund however is a rock! Anyhow chin up onwards and upwards!
Bless you I had same start I am 63 12 months ago went doc he said it’s age menopause border line arthritis don’t witabout it things got worse couldn’t walk down stairs killed to turn over in bed now I am still not 100 % but better than I was been able to go back to work part time still trying to find right medication I am on methotrexate now and some times steroids my life will never be the same it took me a long long time to accept this horrible condition but I agree their is worse things I could have so I am positive hope you feel good soon were a good bunch on here helped me through the bad times take care big hug 🤗 x
OMG yes! Turning around in bed excruciating, getting out of bed even worse! Then getting to the toilet on and off!! The bath even worse! Walking feels like I have huge blisters on the balls of my feet! And having experienced horrible pain in my thumb it's already gone narley! My father had Crones, also an auto immune disease and my mother Artheritis so think genes do have a part to play. Heard Methotrexate is the prescribed drug but seems it doesn't suit many people, not looking forward to starting meds!!
MTX is my best friend! It gave me back my life, and without side effects. Suits most people. Look after yourself, drink lots of water and you should be fine.
You will be ok they started me on sulfrazine was really ill no appetite etc but got their in the end hopefully I hate how I feel some days my husband is really good I sometimes think people at work think I put it on as you look fine on the outside think mine was caused by stress had a lot in my life take care x
Bless you x I feel your pain ☹️ I was exactly the same!! GP took bloods (normal) I felt I was going mad ! Tired of moaning about pain I got on with it x Took me ages just to get out of bed (And the pain excruciating) screamed out to sit on the loo, as pain so bad x I eventually ended up in A&E as I could take no more. GP then referred me to a Rheumatologist. There I was given a anti ccp blood test and diagnosed with very aggressive sero positive RA. I went through a year of very negative thoughts about how I can carry on with this awful painful disease x 2 yes later my pain has left 😁 I am 90% back to my normal self 😁👍 Be kind to yourself, find meds that suit you, and if tired please rest x You become more aware with this disease how important you are. And that you need to learn to say no and put your feelings first 💕 Hope this helps and gives you hope xx
Screaming whilst trying to sit on the toilet, exackly how I've been feeling, however have some relief at the moment! Thank you for your reply great to hear that yourè so much better it's exackly the tonic i needed. Ill take your advice need to think about me😁
Im the same. Two and a bit years ago collapsed and dropped as if hit by a train. Lost about 6 weeks with visits from gp as couldnt get out of bed. Needed help to turn over go to loo couldnt bend knees so had to go in shower etc etc as you have read above. Well im not running marathons but wasnt before but im a lot better than I was. I do need to pace myself and I have ups and downs but have a quality of life im thankfull for that medication cocktail has given plus looking after myself. You will find support and compasion on this forum. Take care of yourself.
Hi Jaxine. I can relate to your story as very similar to mine. One of my doctors was very cold, stating ’you have RA you are going to lose your hair from the drugs and you have it for life’ not what I expected blunt, cold and uncaring.
It has and still is my new journey, that I just have to manage as best as I can. The best thing I did was acceptance - and no matter what this disease throws at me I shall remain hopeful and positive.
Hi Hessie, There are some shite doctors out there who really don't give a .... I've now found an amazing doctor who does! Yes the loosing hair side effect worries me I wonder if this is true? Thank god I've got alot of it😂 wishing you a great 2019
Personally , I was okay, I eat well and take good quality supplements, use good shampoos and conditioners with Morrocon oil... You are going to be fine! .... and back at you for 2019 🤗
My hair has thined. My rheumy said it shouldnt all fall out. Depends on meds I suppose as well as looking after yourself. The strange thing is its gone a bit frizzie....odd.
Are you serious she said it will all fall out? My god what the he'll!! I'm not going meds thst will make my hair fall out, it's not chemo when you've finished it grows back! This is a life time condition! Scared now!
Hi Jaxine, I am like wow reading your post because the exact symptoms you have just started with me like two months ago. And my doctor like yours was like it's just a bit of arthritis. I have diabetes and have been a type 1 diabetic for 35 years now, so I always would think it was my diabetes acting up. But when my hands freeze up and will not move unless I force them and the pain throughout my body is so bad I stay in my PJs for two days without being able to do much of anything. My primary doctor gave me Tramadol for the pain, but do not like taking them and they do relieve some of the pain but not all of it. My appointment is the 16th of this month with rheumatologist. The RA blood test was negative and x- rays only showed arthritis in my neck. Prayers that you get some relief, answers and are feeling better soon.
Please don't panic. Yes, methotrexate can cause some hair loss but that is just a phase. After a while , the loss stops and you will get regrowth. Sometimes that regrowth is different from what it was before but not for me. Methotrexate has been a good drug for me and stopped the awful agony that my hands gave me. It's good to remember that everything has a side effect or two. If you read the patient information leaflet for paracetamol, it would scare you silly. I hope this helps
As Gnarli says please dont panic as far as im aware hardly if any people loose all hair. Im on a mixture of meds and their benifits far outweigh any side affect. If you still want me to list meds I will, but really please dont worry we are all different. Methotrexate has really helped me.
Cheers for that really appreciate it, and you're right Lots of meds have huge side effects, so I just need to just get to grips with things and not over think!!
Completely been where you are now. Side effects vary hugely and many are minimal if at all, so please dont worry about them. As I say many of us really are doing ok. We understand. You concentrate on resting.
Considering everything, your attitude is great. We all do the best we can here. There is a lot of waiting and trying and hurting but it does get better.
We’ve all been there Jaxine and it’s very scary but once you get the right treatment things will get better, there will be ups and downs but don’t let it beat you although at times you’ll feel like pulling your hair out, we’re all here for you and we all rally round each other xxx
Thanks Ajay I already feel reassured that I'm not on my own! When in the middle of the night I was crawling to the loo and found it even harder getting off the dam thing, I felt I was the only person going through it! But I'm not alone and my symptoms are shared by many. Thank you x
Hi Maxine - Me too - the onset of RD for some of us was once described to me as "explosive onset RA!" - it felt like that to me, although in retrospect I think it had been creeping up slowly until it suddenly went wham - the pain and swelling and disability in various joints was sudden and quite frightening. But like others on here, methotrexate, despite some minor side effects, has been my friend , and I'm leading a fairly 'normal' life - doing a lot more in fact than a lot of other people my age. I would probably be even better had I accepted medication earlier instead of being fearful of it.
Oh, and side effects of 7 years on M/X have not included hair loss - still got a full head!
I woke with both wrists feeling like I fell on them. I also had shoulder pain that was awful. The Dr. put me on steroids and got me into see the Arthritis Dr. He then made me go off the steroids for 6 weeks. Every joint hurt but he was then able to diagnose RA. Methetrexate do cause hair thinning which I hate but it along with plaqunil and humara (after shoulder replacement) I feel so much better so it is worth thinning hair........still don’t like it but my hair was thin and fine to begin with. If yours is thick you won’t really notice it much.
I’m a guy 47 yrs old diagnosed 6 years ago after having all the cartilage removed from my right elbow, the surgeons told me after the op that my cartilage was infected, not RA. My right knee started to play up and thank goodness a different surgeon did the op as he spotted it right away.
I went through physio and exercise regimes etc because neither my doctor nor the various other bodies deemed me too young and a man to even suspect me having RA.
At times I thought I was going mad, the pain I felt, everybody just shrugged it off to me being either lazy or just bitching.
Well, not to continue winding myself up, my point is, I don’t think RA is known as well as it should in the medical fraternity other than those in the field. Rant over!
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