Hi all, would love to talk to others with joint pain

traluvie

Hi my name is Tracy. I am 31 with 2 children. I started experiencing recognisable pain around August. I was having pain in wrists and finger(next to thumb) and swelling. Doctor thought it was repetitive strain injury at first as i was having no obvious swelling in my other hand(a bit of pain but i thought this was due to me using my left hand more). Doctor signed me off work for 2 wks with diclofenac and Tramadol. By the time i went back to the doctors i felt like it was working it's way around my body..I was generally feeling tired and aching all over, i was experiening terrible pain and heavyness in my shoulders and neck. Doc did bloods(came back normal) an referred me to Rheumatologist in november. He believed i was showing signs of inflamatory arthritis, i had bloods and xrays done and wrote to my doctor to give me the steroid injection. I had the injection 22nd dec and instantly my aches and swelling went down. Over the past week though i have had pains in elbow ankles and the bottom of my feet.. my both hands now can feel kinda sore most days and when i get pains in my knuckles and wrists it can be quite wooooah that hurts lol..
I saw rheumatologist for second appointment yes and he said most of my bloods were normal or borderline and xrays never showed anything. I tried explaining how this was effecting my everyday life and am eager to get back to work. He said that sometimes ppl can experience pain and still get no diagnosis(not what i wanted to hear) He is now going to send me for a bone scan and said that would show if there was any problems with my bones. I really am hoping it will show something up as sometimes i feel well is it all in my head am i over reacting, then i have a bad day then i think well no i shouldn't be feeling like this...
I't s hard to talk to my friends and my partner as i feel like they think i am just moaning an to be honest they don't know how i am feeling... My partner is great around the house and helps me loads and my daughter helps me at times too so i lucky i have that help just be nice to have some understanding and a diagnosis would be great so i can start right medication and hopefully get back to work.
Well i feel better for getting that off my chest, anyone who reads this who can offer any advice or help i would be extremly grateful.. sometimes u feel like your fighting it on your own.
Thanks

dreamdaisy

Not all forms of arthritis register in blood tests: I have PA (psoriatic arthritis, it's a little like rheumatoid arthritis with the added bonus of skin trouble) and PA is a sero-negative condition, ie my bloods do not show a rheumatoid factor. They did, however, show increased inflammation markers, but even that wasn't enough (intially) to persuade a rheumatologist that I was his 'problem'. You may well have to battle on to get a diagnosis, these things are not that easily recognisable, or treatable, and sometimes it can come down to the interest level of the doctor you see. I now have a very good rheumatologist but she took some finding.

Your friends and partner won't have a clue about how you are feeling, so keep the chit-chat about it all to the bare minimum! It is VERY easy to become an arthritis bore which is where this forum comes into its own. We all suffer on here, we all know our stuff and we can all empathise. There is absolutely no reason why healthy people should understand - I never did when I was what passed for healthy, I never understood pain and how it could affect one. People think that if something hurts you go to the doc, he gives you a pill, and it all goes away. For them, with their trifling little upsets, it does, and aren't they the lucky ones! It is a difficulty we all face, having to keep on keeping on even tho every bone in our bodies is protesting mightily! Tiredness is a huge problem too - it is part-and-parcel of the arthritis and cannot be ignored. You will learn to pace yourself, and become familiar with 'payback', ie do something you love then pay the price the next day, and usually for a few days! I hope you can get to the bottom of what is going on with you: it certainly sounds arthritis-=like in its nature, and I hope you get some answers soon. I wish you well. DD

I forgot to say: welcome to the forum, it's nice to meet you!

traluvie

Thank you for your positive words.
I agree about keeping my aches and pains to myself... as like u say it can be a bore and i know how i would feel if someone kept moaning to me which is why i've tried to look for forums where i can talk freely and people can kind of understand where i'm coming from.
I am trying to adapt at home.. was struggling with straightening my hair so now i just wash blow dry and have it wavy lol.. a new look.. i fill the kettle up using a jug so i don't bear the weight on my wrists.. and i have noticed like you said that on the days i do feel ok i tend to do the things i haven't been able to and then suffer for days later, so i am still in the learning process of pacing myself , keeping active but resting when need be.. a whole new learning experience if i don't say so meself lol.
Am not due to see rheumatologist till 14th April, which seems so long away.. during the meantime though i should have my bone scan and i'm really hoping that it shows things up so i can get diagnosis.
How long did iot take you for you to get your diagnosis?

dreamdaisy

Nine years. I began in April '97 with a fat left knee. I began taking sulphasalazine in February 2002, by which time my knee was 27" in circumference but it was my only affected joint. By October 2006 they decided it was PA (after a short burst of psoriasis which didn't clear for a few months but is controlled now, I presume by the sulpha). DD

traluvie

OMG 9 yrs that awful... you suffered all that time... i bet you were at your wits end, an heres me moaning about a few months.. sorry... hopefully though now the meds you are taking are controling your pa... i have not read much on pa but am going to do some research so i can get a better understanding of your condition...
Take care,
look forward to speaking again soon

dreamdaisy

No, I wasn't at my wits end. I very rarely am, probably due to the fact that I have little idea of what good health is like. My childhood was wrecked by eczema and asthma, I had a reasonable few years when it was only year-round rhinitis and hay fever, the PA is the next logical step when one has an immune system like mine. I am close to completing my fourteenth year of this rubbish, I do wish occasionally I could go back to the good old days when it was just the one joint, but that's a pointless exercise and a waste of useful energy! I am used to it now, and sensibly don't get that exercised about it all any more. The only answer to 'Why me?' is 'Why not?' . The drugs are doing what they can: the fact that it's not enough is neither here nor there, I think it's more a case of I can't have what I want - oh diddums (that is typed with sarcasm!) I am thankful, however, that I live in an age where something, however little, can be done. It is a fact that there is not a cure for arthritis, one just has to come to terms with that and get on with it. I do get down about it, sometimes, 'tis true, but that gets me nowhere and doesn't last long. A few months of pain and discomfort or a few years doesn't come into it: it's still a **** to deal with and live with. One adjusts. I know that rheumatology departments are being somewhat more pro-active in how they respond to new patients: six months on a DMARD and no great result means straight onto a biologic treatment now, in my neck of the woods. I wish it had been like that for me, but it wasn't. I have had too little, too late, in terms of meds, I think. Never mind, I can't change that! DD

traluvie

DD
I can empathise with you when you say you have suffered ill health for most of your life..
I have too, I have been in and out of hospital the past ten yrs with gynae probs, and have had an op every yr for the past 6 yrs lol... so am aware of pain just not pain in my joints lol..
So nice to hear you being so positive about things..
My philosophy is that there is always someone in a worse situation than you... thats what normally keepes me going and gives me a kick up the butt if i'm haveing a down day.. and reading stories like yours also makes me thankful and grateful for what i have..
Chin up and keep positive.. that what i saying to meself.. lol..xx

tillytop

Hi Tracy and welcome from me too.

I really hope that you do get a diagnosis before too long so that at least you know what you are dealing with. I know only too well the feeling that it is "all in your head", particularly when tests come back normal. I was lucky in that my RA was diagnosed fairly quickly (15 years ago) because it followed a "recognised" pattern and it showed up in blood tests and early joint thinning showed up on my initial x-rays. However, the first blood tests I had showed that inflammation levels were just about normal, despite the fact that I was pretty much seized up. It was only when they were repeated that the inflammation levels showed up and, many times since then I have found that the blood test results don't tally with the way I am feeling.

I am sorry you have to wait until April to see the rheumatologist again. Do you have a supportive GP? Hopefully you do and he/she will be able to help you with anti-inflammatories and paini relief to tide you over. If Diclofenac doesn't help you, there are lots of other anti-inflamms to try - but do make sure you ask your GP for a stomach protectinig drug to take alongside because they can be evil on the stomach when you take them regularly. The only other thing to say is that I think it woud be worth asking your GP for further blood tests, perhaps monthly between now and the time of your rheumatology appt. This will enable them to see what is actually happening in terms of any inflammation. It also means that, when you go back to the rheumatologist he will have a set of up to date results to look at. I also suggest that you make sure you get copies of the blood test results too - I have gone to appts so often and found that the results are not available to the consultant which means that you don't get the best out of the appt.

Sorry to ramble, but hope it helps somewhat.

Love Tilly xxx

traluvie

Hi Tilly

Thanks that was very helpful..

My gp is really good and i have been seeing her on a regular basis..
Am currently taking tramadol/paracetamol.. diclofenac and i had steroid injection end of dec. The diclofenac do give me ad dodgy tum, but will mention that next time i see her ..as i have had alot of ppl mention that they are taking something else with the diclofenac to line there stomach???
The steroid has helped with the swelling, general achiness and fatigue, but ama now slowly feeling things creep back up again so i am sure it's wearing thin on me lol..
Am unable to have any more steroids now till i have had my bonescan so am dreading the next few weeks( still not received my appointment yet)
My rheumy has done another set of bloods .. my doc has done 2 lots too.. some normal.. some borderline???
I also have a copy of all my results teh rheumy has done.. which is good.. have a neat lil folder lol..
So at the moment it's just a case of waiting and seeing.. and taking each day as it comes i think..

Take care

Tracy
xxxx

tillytop

Hello again Tracy.

It is really good that your GP is so supportive. Do mention the stomach protecting drugs when you see her next. I take one called Lanzoprazole and the other commonly used one is Omeprazole I think. In my experience GPs are not good at thinking to prescribe these but when you are taking NSAIDs continually, it is really important.

I'm glad the steroid helped but sorry it is now wearing off. Hopefully you won't have too long to wait for your bone scan appt. Can your GP chase the appt for you d'you think if it hasn't come through by the time you see her next?

Sounds as if you are really organised with regard to the blood test results and it is good that they have been done a number of times, rather than just relying on one set.

I think your "take each day as it comes" is the best attitude to have Tracy.

Thinking of you.

Love Tilly xxx

traluvie

Hi Tilly...

I'm def mentioning the stomach lining meds... i hate the awful stomach upsets i get.. have me sitting on the toilet for ages lol.. sorry u didn't need to know that....

I haven't received my appointment yet, my doc said i have to wait for the steroids to wear out my system so it doesn't affect the bone scan....
My post has been awful lately too, have had to have the hospital resend letters again as they have got lost in the post..

Am due to see doc tues, so will mention it to her anyway incase she has a copy of my appointment lol... you never know :!:

And how are you Tilly??

Take care luvie...

Tracy..xx

03darhum

hi dont know what to put kinda new to this

sullivt56

Hi Tracy,
Had Psioratic Arthritis for many years and had pretty much all the pills to date. The last pain killer that I was using, for a good few years, kept the PA in check until I had one massive flare up. Anyhow the Naproxen was prescribed but I was told all the side effects and was additionally prescribed lansaprozole as a stomach liner...still didnt stop the ulcer or the gastritis but the relief was worth it over the period that i used it. Other pill treatments have come close to failing my liver kidney and the cox2 inhibiter, which was undoubtably the best, anti inflamtory was stopped in favour of preventing a heart attack.......
Still with all this do whats best for you but make sure you do lots of research using the internet and other information sources. It will ensure that you are in control of your treatment..... Please dont take this as a means to scare the pants everyone is different and its just what happened to me....

traluvie

Darham .. i have replied on your post...

Suliv....
Thank you for your reply...
You have not scared me... i appreciate every bit of info i recieve... it is all so helpful and keeps me in the loop..

Have you found a middle ground with your meds now??? hope so..

Take care

Tracy..xx

03darhum

thanks tracy and you can call me darren

tillytop

Hello again Tracy

Just to say "good luck" with the GP on Tuesday. I will be thinking of you.

Thanks for asking how I am doing - I'm having a good day today thanks!

Love Tilly xxx

traluvie

Hi Tilly,

Glad your having a gd day ..

I;m having to rearrange gp on tues as my bone scan appointment has come through asnd i def need to go to that lol...

Thanx for the message will let you know how i get on am going to rearrange my appointment tom, hopefully i can just change it to a leter time..

Take care luvie..

Tracy..xx

tillytop

Oh really good luck with your bone scan tomorrow! Please do post an update on LWA to let us know how it went.

Will be thinking of you.

Love Tilly xxx

traluvie

Thanx Tilly,

Will let you know how i get on...xx

sullivt56

Hi Tracy,
not quite found middle ground for meds...On the usual pain killers co codamol and tramadol boosted with the odd injection of depro- Medrone as an interim. Waiting for Etanercept therapy to start.

Hope you doing Ok....

tracey40

hi tracy, another tracey here, lol, i know exactly how you feel love, ive been having pains for a while, and they thought it might have been a trapped nerve, doctores huh, lol, so i went back this week, and he did some bloods. like you i hope somethoing shows up, do you find that your hands are stiff sometimes, mine are terrible, feels like theyre gonna snap,, i have to walk with a stick as well, as i need to walk on my heels, my toes really hurt, just wanted to reply to you, so that you know you arent on ur own, theres plenty out there, including me, do let me know how you get on, good luck with everything, im on here every night, sad arent i lol, if u ever want to chat take care love tracey xx

dreamdaisy

Being on here isn't sad, well I don't think so as you can probably tell! I find it helps a great deal. I hope to see your name here and there, tracey40 - we are a friendly bunch and we know our stuff. I wish you well. DD

annajd

Hi Tracy

i am 31 also and have just been diagnosed with spinal stenosis and arthritis of the spine. i know it can been frrustrating not to get a dignosis as i have been suffering for 15 years until finally to have a diagnosis over the last couple of months. it is a great sense of relief when you get a diagnosis as it explians that there a reason why you get the pain you do ( and no its not in your head).

i hope the scan gives you the answers that you are looking for. if you ever want to chat, drop me a pm.

anna