new and desperate!

paulinexyz

Hi,
I'm Pauline - was diagnosed two years ago with OA, have slipped discs at the bottom of my spine, OA mostly in hips, spine and I think coming between shoulder blades in spine and in shoulders. Was really bad at the time, due to trapped nerves and sciatica - has settled to "relentless". Saw Rheumy at the time who thought I had PA, I have psoriasis on my feet, but had MRI and no sign of inflammation, so OA is diagnosis.
Fast forward to now - I've been trying to pretend it isn't there, cycling between being as active as I can and then crashing with fatigue. I'm now shattered most of the time, really stiff and sore first thing in the mornings (have been like this from the start) and when I sit for any length of time. I feel a little like a zombie i'm so tired. I wake several times in the night but go straight back to sleep but never wake refreshed. When I try and do anything - a day out, or a long (for me) walk along the canal - I find i'm shattered and ill for a couple of days after. I'm waiting for a physio appointment - apparently I need to learn to pace myself and save some energy for bad days.
I take lodine in the mornings, and amatryptiline at night.
I guess i'm trying to connect with someone who understands how I feel - I don't look ill - and also looking for advice on pacing. Also i've read that with OA you should feel better in the mornings/after resting, but its the exact opposite for me - does anyone else find this??
Sorry for the long post - i'm desperately trying to come to terms with this
P

valval

hi welcome i think it might be time to have another blood test to see what going on the exhaustion and stiffness not good val

CJHunter

hiya, I have read your poost and am wondering if you are still under a reummy. Is the diagnosis O.A and P.A or was the PA dismissed??

the fatigue is hell and just wipes me out at times. has you G.P mentioned amitryptiline, taken as a low does it relaxes the muscles and helps u get to stage 3 sleep which u need and we often dont get to this level of sleep because of the pain.

im not a doc am just posting my opinion.

take care.xx

tanith

I also have O/A in multiple joints and spine, maybe a different Anti-inflammatory drug would be more helpful with the pain you could ask your GP if trying something different would help. I also took Amatryptiline when the pain was breaking up my sleep it did help, I was also very stiff in the mornings.. just took time to get going.
Definately see your GP and tell him how bad things are for you and see what he suggests..I didn't find physio really helped much but then I soon had to have surgery on my spine and a new hip.
I hope you get some relief soon.

hileena111

Hi Pauline
I've got OA in my hips, lower spine, neck and ankle.
With OA you are very stiff in the morning but once moving gently it wears off {a bit} but the sitting and moving.......you have to hit a happy medium.
If I sit too long I get stiff and sore but If i walk/stand too long I get stiff and sore......vicious circle :roll:
Its a matter of doing a little bit of work {at home} sitting for a while then doing a little bit more. The majority of us when we have a goodish day we go mad and do the things that we havent managed to do when we were sore....then payback!!!! We can hardly move the next day.
Have you any tablets you could take before getting up in the morning...that might help to ease you into the day. I have a very old desktop computer in the bedroom. I'm on paracetamol and naproxen slow release.....I take a couple of paracetamol, move over to the computer and check a few posts and move a little bit before I start getting ready to face the day.
Ask if there is anything more you need to know.
Love
HIleena

elnafinn

Hi Pauline

I am sorry to read your story. With OA you do feel worse in the mornings and after a hot shower that usually improves things. Are you on iodine for a thyroid issue? I take thyroxine and have done since I was 16 years old - am 61 years old now. I have oa. Amitriptyline can leave you feeling whoosy the next morning, however early you take it the evening before. I was on it for a time 25mg for IBS D and always felt not quite with it on awakening. I no longer need to take it and I noticed a great difference in how I felt in the mornings. It did the trick for me though whilst taking it with the added bonus of making me sleep better which it is often prescribed for too. It is a very versatile medication. Taken in high dosage it is an anti depressant too. It can also help migraines. For my OA I was taking cocodamols and anti inflammatories. Since having two new knees I no longer need the cocodamols but still take the anti inflammatories for others parts of my anatomy which are suffering as a result of OA. :roll: I rarely sit much in the day, when home unless in front of the pc (which I suppose on reflection is quite often!!) I have in the past had a nap but no longer need to at the moment. I do have a stretching exercise regime most days too. You know your own body better than anyone and so if possible you have to make up your own daily routine and when not so good be kind to yourself, another better day will come along soon.

Elna x

sailrib

I totally know how you feel. I feel worse in the mornings and I can hardly walk due to the stiffness. Once I get moving, then I am fine but that can take a couple of hours.

Keep your chin up. x

paulinexyz

Thanks for the replies - I so appreciate them, and whilst I wouldn't wish this on anyone its lovely to find people who understand how I feel. My diagnosis is definitely OA, and whilst i'm not seeing the rheumy at the minute I can go back at any time. I've also been offered an appointment with an orthopaedic surgeon but dont want to think about surgery at the moment.

I was very worried about the time it takes to get going in the mornings but it seems I'm not alone in this, which is reassuring (sorry!). Am waiting a physio appointment so shall see how that goes, then back to GP to discuss pain management again.

I really appreciate your support - one of the hardest things is coming to terms with the fact that this is forever

barbara12

Hi P
Its good to meet you, Im so sorry you had to look for us, but glad you have ....like you I have OA in my back and hips..the tiredness is one thing I just cant explain, only I do try to keep busy with resting in between.
I also make the best of my good days...and believe me you will get them, and coming on here and talking to people that understand some of what you are going through will help a lot.
Yoy take care of yourself xx

emsjane

Hi Pauline,

Im very similar to you. I was diagnosed with OA. I now have it in multiple joints, neck, both hips, a bit in both knees, both ankles, big toe and in lots of joints in my hands!

I see a Rheumy who now says i have seronegative RA. I have been put on Methotrexate and so far it isn't really helping!!! It might be worth asking to be referred back to the Rheumatologists just to get your bloods checked properly to make sure things haven't changed again!

I do have to pace myself nowadays and it does help. I do a bit, then have a cuppa and a rest, then i do a bit more, then rest, etc etc. It's so important so that you don't end up in too much pain the next day or that evening!

Good luck, i hope you get some help and start feeling more positive. We all have good days and bad days on here!! :shock:

paulinexyz

Nice to meet you both - yes I think I need to learn how to pace myself. Things finally came to a head for me a couple of weekends ago when I went to the city for a long weekend - had such a great day the first day, walked all over the city and went out to dinner in the evening - the next day we went for a long drive out, and by that evening I just wanted to go home. It took me a few days to recover - I felt quite ill, as well as being stiff, sore and shattered.

Shall see how things pan out with physio, then see about re-visiting rheumy as you suggest, then maybe ortho surgeon. hadn't heard of seronegative RA - my rheumy was sure it was something such, but results came back negative so it's something to think about, and maybe discuss with her now i've had a couple of years of living with this.

Pauline :-)

tjt6768

Hi Pauline. I'm just about to log off but wanted to welcome you to the forum..
I hope that things aren't too bad right now and you manage a decent sleep.
Hope that you find this place as useful as I do. Chat later, take care.

I'm a bit zombie-like myself right now.. Lol

Colin1

Hello P and nice to meet you, First thing is do you still see the Rheumatologist, i think you need a follow up if you dont. But get along to the GP and tell him your not happy. I dont have OA so dont know much about it. However i was on amertrip some years ago i went out like a light and slept all night. You could phone the Rheumy nurse and ask to come in for a chat with her they are very good. Please dont leave it or you start feeling more down. Hope things improve for you soon, take care
Colin

paulinexyz

Nice to meet you Tony and sorry to hear you're in zombieland just now - am feeling a little better day by day as I get back into a slower routine - I work the first part of the week but look forward to my days off later on.

Colin I haven't seen the rhuemy since diagnosis, but have an open invitation to go back. I'm going to make an appointment once i've seen physio. Not sure if we have a rhuemy nurse - shall ask at surgery.

Thanks! Pauline

dreamdaisy

Hello Pauline, I apologise for not replying sooner but life ain't that grand at the moment. I don't often recommend googling anything but one very good thing to look at is The Spoon Theory as that beautifully explains how to conserve your energies. I have PsA (psoriatic arthritis) and the damage from that has led to OA in my knees and ankles. Basically I don't get going any more, each day is a lurch between a small burst of activity followed by a rest to recover and build up the limited reserves of energy for the next small burst! On my rougher days in can take all day to change the bed but the main thing is I get it done. I am 52, fifteen years into arthritis, and currently furiously resentful at what my life has become but this will pass as all things do. You will be OK, you will find your way through and develop your own strategies to cope, and remember that you are now not alone, we're all with you. I wish you well. DD

paulinexyz

Hi dreamdaisy, sorry to hear life isn't all it could be just now - furiously resentful pretty much sums up how I feel. I know if I can accept it life will be easier - or i'm hoping so - trouble is on a good day I feel I can conquer the world!!!

Shall google spoon theory and have a read
Pauline

suzygirl

Pauline, just wanted to welcome you. I have inflammatory arthritis, OA and disk problems. I have just been referred to ortho. I put it off 2 years ago, and really wish I hadnt now, as it has suddenly got so much worse.

I know you have a lot going on, and it can all seem too much, which is how I felt at the time. If you get it sorted though, then you will have a better quality of life.

Take some time to have a think and read the spoon theory, it is an excellent read. It is also available online as a video on a certain well known website that shows videos. Y**tu*e

paulinexyz

Hi suzy, thankyou for the welcome. Have cut the day short today as seem to have run out of puff again. Was feeling great this morning once I got going.

I read the spoon theory and it made be cry!! such a wuss That totally describes how it feels to be me - i've sent it to my partner as he just doesn't understand how i can look so well, and act so well and then just cave.

I'm going to bear it in mind over the coming days and try and pace myself, since now I understand more about what that means.

Pauline

frogmorton

Hi pauline

l have inflamatory arthritis and OA too in my back and neck. I have had surgery on mine and glad l did as l had totally lost the feeling in my RT leg. Still can't feel part of my Rt foot b*m cheek and behind RT knee.

l recently went on one of arthritiscare's 'mange your long-term condition' courses and was taught amongst other things how to pace myself. If you go to the A/C homepage click through to the regions and click on where you live you can see if there are any imminent???

Love

Toni xx

Ps sorry l am late to this :oops:

paulinexyz

Hi frogmorton, no apology necessary, it's very kind of you to take the time to respond. I'll certainly look into that course - I live remotely but there may be an opportunity to attend in Glasgow.

Thanks everyone for your responses and your support - i truely appreciate it

Pauline

purplesparkle

Hello Pauline, I'm sorry to hear your feeling like this. I just thought I would share what I'm going through because I'm wondering if you are having the same problem????

I started having shoulder & collar bone pain 5-6yrs ago went to physio who sent me to orthapeadic consultant, I had MRI scans & was told I had an shoulder inpingement-they operated & suprise suprise found no inpingement, they also took a collarbone biopsy (I was awake during all of this) they then told me I had OA in my collarbone & neck!sent me to a rheumy who took lots of bloods they thought it was going to be (they were very convinced) inflammatory arthritis but they can't find anything to say it is so I'm left now with the possibility of being diagnosed with fibromalgia and having OA as well.

The reason I say yours sounds similar to my pain as I also feel stiff for longer than what they say you have with OA and lately the tiredness is horrible & I struggle to do things more and more and I'm just as confused as you sound and want answers just like you do!

It's all so confusing my Doctor has basically told me everyone gets OA at some point but any inflammatory arthritis is worse & some Doctors do not beleive in fibromyalgia so where do we go from here?????

Sorry for the downer but it does make me feel like that! Good luck with getting help and rid of your pain & let us know how your doing xxx