Hello from a newbie

bramalfie

Hi there,

Thought I should introduce myself!! I am in the process of getting a diagnosis from the Rheumy but it is looking like spondyloarthritis (not sure if that is the correct spelling!!). Saw them for the initial consultation last Tuesday and he has sent me for X-rays and MRI scan which is on Tuesday, then back to the Rheumy just before Christmas.

I have been suffering with pain in my back, pelvis and neck for the last couple of years with some occasional pain in most of the rest of my joints. I'm taking Naproxen with Omezaprole (again not sure of spelling!!) to protect my stomach along with Tramadol at night and paracetamol as neccessary during the day. I seem to pretty much have the pain under control thankfully though as I'm sure you can all appreciate some days are worse than others!!

The thing that definitely is not under control is the tiredness!! I wake every morning almost without fail at 4/4:30 and then drift in and out of sleep until it is time to get up. Has anyone got any tips on how to improve this? Obviously this is something that I will be discussing with the Rheumy when I see him again...

Anyway enough of my rambling!! Nice to "meet" you all and I look forward to getting to know you all better!!

valval

welcome i have just got memorie foam topper and am sleeping so much better it does not have to be an expensive one.
when rhumy knows what he is dealing with will give you some different meds that will help with exhaustion they do not kick in straight away and you do have to learn to pace your self but life will be much better (((hugs))) to keep you going val

bramalfie

Thanks Val,

A memory foam mattress is definitely on the wish list!!

I'm gradually learning what I can and can't do and how much is too much or indeed not enough!! Glad to hear there are some meds that may be able to help, guess I just need to be patient for a little longer!!

Thanks for the hugs!!

kellerman

Hi and welcome from me too. I also have a memory foam mattress....I don't have problems going to sleep...always exhausted but I do get up early...never later than about 5.30.
I wake up during the night too but manage to go back to sleep.
I put mine down to having family problems at the moment....but now I think about it I think its habit.
By 6pm I'm shattered. Definately mention it to rheumy....May

woodbon

Hello,
Welcome to the forum. Sounds like you are having a nasty time of it. I have a painful neck and back and sympathise.
Love Sue xxx

julie47

Hi and welcome to the forum.
I am another that wakes either in the night or very early ie 4.30 and like you keep napping then until it is time to get up. Then.....feel shattered when the alarm goes of at 6.20 to get up.
At this moment in time I am typing with difficulty keeping the eyes open. Hope I wake up properly soon

On the odd occasion when I have slept through I have felt no better :shock:

Hope you can break the sleep pattern a couple of times and get a good nights rest soon.
(I turn on a radio very low so not to wake oh, it helps me)

Juuliepf x

bramalfie

I had to be up at 5:30 this morning for work... I am so tired I really shouldn't have been driving.... Same again tomorrow but I am seriously considering taking the day off. I think I overdid things last week and it's catching up with me now...

bramalfie

So exhausted all I want to do is curl up have a good cry and then go to sleep!! Thankfully the pain isn't too bad today so I don't have that to deal with too!!

Spoke to my boss this afternoon and explained the situation. Asked if there was any chance of having tomorrow off to try and get some sleep but we are so busy in the run up to Christmas that he wasn't too keen!! So we compromised with me coming in at 10 instead of 7!! I'll then be leaving at 3:30 to head off for my MRI scan.

On a slightly separate note is there a list of abbreviations anywhere? I am reading the other threads and can't work them all out!! RA - I assume is Rheumatoid Arthritis, OA Osteo Arthritis but being new to the whole world of Arthur I am confused by the rest!!

barbara12

Hi
And a very warm welcome from me, the tiredness is so hard to cope with especially with you working.
Im glad you have an understanding boss, I must say that I find that the tiredness comes and goes, iv know idea why, but I just try to go along with.
Wishing you well with everything.

valval

we did have a list some where but can not remember what it was called one of the others will i bit brain dead at moment but not loosing my marbles lol ask if you not sure there so many new people most might not know so will be glad if you ask for them
((()))= hugs
to start you off
pocket dutys= just our way of giving suport for rhummy visits etc that worring us

bramalfie

Thanks valval!! Just did a quick search and found a medical abbreviation thread which answered some of my questions!

julie47

Hi

Hope you managed a decent sleep last night and that you have had an extra couple of hours before starting work.

I am glad your boss let you start a little later, that was good of him/her.

Hope the mri scan goes well too (even though you are laid down, I am afraid there is no chance of catching up on more sleep as they are quite noisey )

Take care
Juliepf x

cutieclaire

Nice to meet you and welcome.

You sound very together and upbeat. I can remember when I was diagnosed and I was done in the dumps and in so much pain. Well done.

I have the exact same arthritis hun. So I can understand how the pain feels. I have spondylathropathy which is a the same as yours and classed as Rheumatoid arthritis.

Hope they put u on the meds soon as that will help too.

Welcome and hope you find this site as supportive as I do. Keep posting and if you need anything just shout.

Love Claire xxxxxxxx

frogmorton

Hi Bramalfie

Welcome to the forum from me and Cris (skezier - who has seen your post but not well enough to post atm)

Both of us wanted to reply to your thread as we think we can reassure you a little and maybe help. Collectively we have cervical spond and spondylitis. OA, bone growths PA, inflammatory arthritis and lots of pain!!! BUT we are alright - and promise you there is life after diagnosis x:-D


Firstly l take amitriptyline at night 25mg. This is a low dose l therefore get better sleep and muscles relax.

Another thing l have tried was gabapentin which is an anti-epilepsy med and it also does something to stop the pain getting through from your brain. It didn't work for me, but does for some on here and Cris takes pregablin which is a 2nd generation and she thinks it is really good.

You are already on an anti-inflam and pain relief, but other stuff can help too.

Gladyou found us and nice to meet you.

Love and hugs

Toni and Cris. xxxx

bramalfie

Thanks everyone for the welcome!! Feel much better today, although I woke at 3:30 this morning and just dosed on and off until I had to get up at 8, at least I didn't have to get up at 5:30!!

The MRI was an experience!! I didn't mind the noise and the confined space too much but was in complete agony by the time it was over as I couldn't move so had seized up!!

I'm so glad to hear that there are other meds that I can take to get the sleep sorted. I'm back at the consultant on the 20th to discuss the X-ray and MRI so will discuss it with him then, unless people think it worth speaking to my GP before then?

cutieclaire

I would wait and see as they might need to do further tests. I was given steroids at the beginning of treatment so I was out of pain within 5 days.

Then I was put on sulfazalazine ( Sorry I am hopeless at spelling), Celebrex, tramadol, calcium tabs etc. I take cod liver oil 2 which helps.

I was then given physio and an OT to help around the house.

Good luck and hope they see you soon.

Claire
xxxxxxx

bramalfie

Have my appt on Tuesday to get the MRI and X-ray results and hopefully a firm diagnosis.

Guess I should start thinking about questions to ask and get them written down. Anybody got any advice on things I should be asking?