Recently diagnosed and saying hi

littleelf

Hello folks

I'm a 45 year old classroom assistant and six months ago, I was diagnosed with RA. In the last few weeks, I had been getting terrible pain in my left shoulder and right rib - an x-ray revealed that I also have Scoliosis in the upper spine and Degenerative Thoracic Spine (they think caused by OA). I feel like I've aged about 20 years in the last month.

I'm still awaiting my Rheumatology appointment (October is the latest news - a year from my initial diagnosis) and am being given Ibuprofen by my GP.

Trying not to let these things beat me - but some days it's hard.

Anyway, just saying hi

[Deleted User]

Welcome to Arthritis Care Forums littlelf from the moderation team

As mods we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

I look forward to seeing you posting on the boards.

Best wishes

Mod JK

littleelf

Thank you so much. I've already read some posts and it is a little scary with what to expect. The information is great though.

littleelf

Thank you so much.

dreamdaisy

Hello, it's nice to meet you but I am sorry that you have had to find us. I cannot help with any of your specific conditions (I have psoriatic arthritis, osteoarthritis and fibromyalgia) but rest assured you are talking to the initiated when it comes to dealing with diagnosis, adjusting our life styles to suit the outrageous demands of our selfish diseases and coping with the reactions of friends and family.

October is some time away - I used to shortcut my way to appointments by saying I would take a cancellation at a moments notice, but I was fortunate in that I was self-employed at the time and lived a three minute drive from the hospital. The summer holidays are approaching, however, so that may become an option for you - think o'nt (as the Bard would say).

There are a number of boards on here and their titles are self-explanatory. ChitChat is supposed to be an arthritis-free zone but there are five others to choose from. Most people look in on Living with Arthritis (LWA) so if you post again you may hear from those who are in a similar boat to you (I know of one, she does look in on this board occasionally but is usually found on LWA). There are a couple of articles on the net that may be of interest, one is called The Spoon Theory and the other There's a Gorilla in my House. These are useful for family and friends to read to try and gain some insight into what you are experiencing but be prepared for some dim-witted and silly comments (usually along the lines of 'But you look so well' and 'You could do that yesterday so why not today?'

Everyone on here has had their lives drastically altered from what they thought would be. Some cope with it better than others but isn't that true of all aspects of life? I have to laugh at myself now, nineteen years ago I thought one affected joint was an outrage, now I realise I was in clover. None of us know what the future holds - those who are doing OK don't post (which is why the forum gives a rather skewed view of matters) and remember that the others' experiences on here are not (and never will be) your experience. I wish you well and hope to see your name here-and-there around the boards. DD

stickywicket

Hello littleelf and welcome from me, too

I would endorse all that DD has written. I have RA which has led, over many years, to OA but, thankfully, no scoliosis.

I'm wondering who diagnosed your RA. It's usually done by a rheumatologist but it sounds as if you haven't seen one yet if you're only taking ibuprofen (an anti-inflammatory). Rheumatologists usually prescribe a DMARD (Disease Modifying Anti-Rheumatic Drug) for RA. And really, if you have RA, the sooner you are on one the better. Is your GP aware of the long wait for an appointment? If not it might be worth having a chat with him / her.

barbara12

Hello littleelf and a warm welcome from me..but lke we always say sorry you had to look for us in the first place
You will find forum is very friendly and supportive so you stay around,maybe your GP is being cautious with your meds ..you could ask for the rheumy appointment to be brought forward or go on there cancellation list, this has save me months in the past..hope to see more of your name around the forum..

theresak

Hello little elf, and a very warm welcome to the forum, though I`m sorry you`ve been diagnosed with RA etc.

October seems an awful long time to wait to see a rheumatologist - I`d do as others have suggested and say you are willing to take a cancellation, if that`s possible.

I have RA, and was told a couple of weeks ago I have OA too, just to add to the fun, but never mind - there`s always someone worse off.

Do keep posting,

Tezz x

littleelf

Thank you very much everyone. I hate to have to say it, but I'm glad that there are people out there to talk to about this.

Dreamdaisy, I've been lucky so far, in that my family have been so supportive - a little too much at times. My husband has proven me right a few times about over-doing things. I can't get a handle on that yet. I can't do what I used to and it's frustrating as hell. It seems to have come on so quickly.

Stickywicket, although it's not official by the Rheumatologist, my ESR rate is always risen and my fingers already have nodules and are twisting. I guess the GP is confident that it is RA. She's guessing about the OA - as she says that's what usually causes degenerative spine - but says it could be RA too. I've heard from a friend about DMARD - that scares me too :S

Thanks too barbara12 adn theresak. I think I will give the cancellation thing a try. Will give the hospital a ring on Monday. The GP did put a very strong letter forward on my last visit - due to my arms and right leg 'losing power' occasionally; but still not heard anything! Guess there are a lot of people having to wait. I'm not a complainer (well, not that way, anyway), but I'm thinking I really do need to get seen to a lot earlier than October.

Thanks to you all. I know that this site will be a great help. Onwards and upwards, aye?!

dreamdaisy

I don't know what your friend has told you about DMARDs but many of us on here take them and with very little trouble, me included. A high ESR is an indication (as is a high CRP) but for RA the main indicator is a raised level of rheumatoid factor - this is known as sero-positive RA and that may have encouraged your GP to diagnose. GPs know a little about a lot and I am surprised that you have not been referred earlier to someone who knows a lot about a little. DD

littleelf

My work friend was giving me second hand knowledge about her friend. She had some pretty bad side effects and it scares me, you know. Plus, I react badly to tablets as it is. One GP had put me on Meloxicam for anti-inflammatory, but they made me feel so sick. Hence being on Ibuprofen three times a day, along with Omeprazole to protect the ol' tum. It's the fear of the unknown and my silly mgoin working overtime. I've had so little information from the GP, despite asking loads of questions. Which is why I think this forum will be good for me as I go through this process.

stickywicket

Even us old hands overdo things in full knowledge that there will be pay back. It's human nature. You are in the early stages and still learning your limits – which vary from day to day just to complicate matters further :roll:

My parents were somewhat overprotective (I was diagnosed at 15) which is probably why I still push the boundaries at 69.

Like DD, I'm another on DMARDS and thank God I was given them. They weren't available when I was first diagnosed and they have made my life much better. All medication has potential side-effects but that doesn't mean we are likely to get them. We are very well-monitored while on these meds and the regular blood tests are there to point to any possible problems before they become serious.

Anti-inflammatories do require stomach protectors and preferably to be taken with food. I don't think anyone comes to this with a love of medication but we have to get used to it for our own sakes.

I wonder if your GP is aware you're waiting so long for a first visit. Probably not. It might be worth letting him know.

littleelf

I was referred as soon as I went to the GP last October, but as I've read from several posts it might have been for a general referral and not emergency (which I think had now been done). When I changed my address, Rheumatology told me that I will be issued with my appointment in July, but for October. However, I'm going to keep ringing for a cancellation. All of your advice is invaluable and I certainly feel better about the medication.

stickywicket

littleelf wrote:

When I changed my address,

That's a scary phrase Do ensure they have all your details correct and you don't drop through the cracks.

littleelf

That's a good excuse for me to ring up again isn't it ... to check that they have the right details

frogmorton

A great excuse Littleelf

Get on that phone

Lovely to meet you too. I hope you will find the forums helpful and join in wherever you fancy. We are a friendly group of people - oh :oops: and a welcome form me too

Love

Toni xxx

littleelf

Thank you for the warm welcome everyone.

I've also decided to go back my GP too. I've been in some pain this weekend ( ok today again ). The Ibuprofen didn't make a dent.