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Hi, thanks for replying.  How long have you had RA? Do you have difficulty with everyday things?  What kind of things do you do to ease pain?

Sorry for all the questions! It's just that i've never spoken to anyone with RA before - should have joined frum ages ago!!

Hello Anna. I've had RA for almost 3 years but have not seen a rheumatologist yet. I have an appointment next month. I have been going to my GP for most of this time complaining of a very painful shoulder which spread to my knees and ankles. My shoulder was even swollen but I was just given codeine. It was when I saw another GP regarding another problem (Raynauds) that he asked me to have a blood test which showed a raised Rheumatoid Factor and Serum Protein. Then the original GP was reluctant to refer me to a rheumatologist. It was people on this forum gave me the confidence to demand the referral!! I now still take codeine but also Naproxen and Nefopam which is very good at helping with the pain. I do struggle walking and I'm right handed so my painful shoulder is the right one unfortunately. Sorry to ramble on so much. Hope you get all the help and support. Please keep in touch

Hi Matron.  It is so frustrating when you don't get the correct diagnosis. My doctor told me I was wearing the incorrect footwear at first amongst things.  It was only when I could barely walk one day and had an emergency appointment with another doctor and he recognised the symptoms immediately and sent me for blood tests that it was diagnosed.  I too had Naproxen which I found took the edge of the pain.  I have tried various other medications over time, some of which have made me feel really ill and "Zombiefyed!!" It's really difficult to manage with no medication - i've got a wheatbag which is a godsend and an ice pack.  If nothing else, it comforts for a while.  I've also had fluid drained from my knees and steroid injections into the joints which was amazing! My knees were so big (swollen) I could hardly bend them or walk and had that done about 6 months ago and have been fantastic since (I know its only temporary but wow - I can walk down stairs normally!!)

I had a steroid injection in my shoulder but it didn't help. Naproxen is good but I have to remember to take it when I have a meal otherwise I have abdominal pain. If it's not one thing it's another. It will be interesting to see what the rheumatologist says next month. I'm pleased you're getting some relief at the moment. Just have to celebrate the good days.

Codeine is contraindicated if trying for a baby unfortunately and as a nurse I know almost everything is. You would think with all the advances in medicine someone would have come up with a drug, especially for pain that's safe to take not only prenatally but also whilst pregnant.

Is there any medication that could take the edge off slightly though while trying, I'm 18 and hoping to have a family in the future but I don't think I could deal with the agony of not having any pain management?:-/

Hi Becki - Thanks for your reply! i'm really sorry to hear you have RA, 18 is such a young age to have it! Are you on medication? How severe is yours? I haven't tried a Tenns Machine - but heard about them years ago - will definately try!  

It's worth a look, it gave me some relief on my shoulders and knees :-) and you can them quite cheap from Argos!:-) I'm on sulphasalazine, but had RA since I was 8, was just never diagnosed properly until a month ago.. It's in pretty much all my joints now. I'm in agony pretty much all day of everyday so I can sympathise with how you're feeling.. How severe is yours?

Mine started off about 3 years ago with pain in my foot and then progressed quite quickly.  Within a year I had it in both feet, ankles, knees, elbows, fingers/hands/wrists and for the last 3 weeks neck and right shoulder.  I work full time (administration) and am doing a part-time degree in Animal Science which has involved maual work at a Zoo. (My dream job!!) The only way I could do my work placement at the Zoo was to have steroid injections but really unsure now whether it is actually a job that I could realistically do. Are you still at school or do you work?  Do you find that you have absolutely no energy some days?  

That is fast progression I feel for you! I know what you mean, I always doubt whether I should be doing stuff because it hurts or I think "will I be suffering tomorrow??" .. I believe if it's your dream job you shouldn't let it be taken away from you, if they steroid injections helped then that could be the way? But I sympathise because I do the exact Same thing as you!

I'm at sixth form and work part time.. On the go all the time and it hurts a lot! But if I stop I know I will feel down and stop doing stuff altogether.. I was told I have fibromyalgia as well, that's what they thought it was initially, so I thought that's why I have like no energy.. Do you struggle sitting down for too long at all??

Yes, I sit down at a desk for most of the day and have been told by the doctor that my job is probably not the best for my condition.  I feel so stiff when trying to stand - I tend to get up and go for a short walk at regular intervals (even if just to the toilet) so I don't seize up completely.  My friends' daughter has fibromyalgia and complains of similar symptoms to RA.  Do you find that you have pain in a specific area such as the wrists and then it will 'move' to say your feet (wrists stop hurting)?

My wrist just hurt all the time, a lot when I write.. I'm allowed rest breaks in my exams this year after my diagnosis so I can get up and have a walk too and to give my hands a break, they cease up a lot after two hours of writing.. I don't get pain in my feet really because I wear flat shoes a lot.. My ankles are really bad though.. Does your pain transfer??

Yes, it stays in an area for a while then moves somewhere else but never goes completely.  I don't know whether you would be entitled due to level of study but I began my  degree (Higher Ed) in September and because i've been diagnosed with RA i'm entitled to equipment such as Laptop, Dictation Machine etc. to help with my studies.  I looked through the Student Finance website and its called DSA (Disabled students Allowance) It is not means tested and you do not have to pay it back.  Included is a Software package called Dragon Naturaly Speaking.  I haven't recieved my things yet as I only went for assessment the other day but was given a demonstration of the software and it is fantastic - especially for essays and note taking.  The voice recognition is great and types up exactly what you say.  Definately something worth getting if you're a student.  Also, the dictation machine will be great for recording lectures and taking notes.  You can also plug that into your computer and it will type up everything for you.  It will be such a time-saver!! I find that because my wrists hurt, I don't take as many notes as I should and have to take lots of breaks when typing essays so I can wait for the things to arrive!

Oh my God that's amazing! Thank you so much, I'm hopefully going to uni in September so I will definitely look into that! It would be fantastic! You're a life saver! I bet you're excited! Did you say you do zoology??

I study Animal Science.  I've just quickly looked at the criteria for this eligibility and it is only Higher Education so that is definately something for you to look at for September! The Dragon Naturally Speaking costs under £100 if it was something you would like to have before then.  I'm sure your exams officer at school would have made all preparations for you but make sure you get extra time for your exams too and use of laptop. (I work in a school and know a little about it).  I've managed to get 25% extra time for my exam next year and to be able to use a laptop. Not sure about you but I definately find typing easier than writing for long periods!

I find it easier to type too, the only problem is that I can write a lot faster than I can type, it just hurts a hell of a lot and it eventually ceases my hand up.. I wish I could type fast! And that's so good, I'm hoping I can get the same hope next year!:-)