this mornings attempt when will i get a diagnosis and... - NRAS

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this mornings attempt when will i get a diagnosis and where do i go from here ive had enough this morning

minka profile image
15 Replies

well im still looking to see if i have rumi

got up this morning at 6.30 am

hand joints where aching no swelling left knee was aching along with feet

neck was aching

not like pain just aching

sweat quite a bit and a bit of trembling in the hand when i got down stairs

which i new what this was its not angsiety even though im on me own till tonight

and this grissely substance under my knees and in me left ankle

al feels like slight burning and i felt sick with it this morning

i want to keep going and walking about but the things sort of tires me out a bit in walking

even though the mid says do it.

might take some brufen tonight instead of the parasetomol see how that goes usualy makes me worse.

my whole body feels musleley ache holding me bones up.

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minka
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15 Replies
GreenFlower profile image
GreenFlower

Hi Minka. I too was up at 6.30 this morning with similar symptoms and I'm also waiting for a diagnosis. I haven't much to offer except solidarity with another sufferer but hang in there! I can't take ibuprofen but my GP prescribed diclofenac which is available over the counter as Voltarol I think. It helps a bit, as does cocodamol, but the over-the-counter version of that is very weak due to some people finding it addictive.

It helps to hold your hand under running water. I find that swimming is helpful too. I hope you feel better soon.

minka profile image
minka

have you had any bloods done what hurts on you?

swimming now makes me knees go sore that how it started in april always kept me quads strong with swimming then after 7 years all hel let losse started in left leg then water under right leg then ankle on worst left leg and aculese tendon moving to one side

then back then arms and kneck everthing all over the place

GreenFlower profile image
GreenFlower

My fingers ache the most and there are swellings on the first joint of all but two of my fingers now. Since I started taking diclofenac the swelling has decreased and I can now make a fist again, although it hurts to do so because the tendons are stretched over the swellings.

My shoulders also hurt most of the time. My wrists, toe joints and knees often ache and sometimes swell. My elbows and ankles sometimes join in too and can be very stiff in the mornings. I have to wake up at 6am to unstick everything if I need to be up and about by 9am.

I have more movement in my left shoulder than in my right, so I have a tendency to swim in circles! I find that gentle swimming works for me, keeping my joints moving.

I first went to the GP in April. I have had blood tests but they are inconclusive and the rheumatologist has asked for more tests to be done by my GP. The sedimentation rate was slightly raised but the RF was normal. I have an appointment on Thursday to get the latest test results.

minka profile image
minka

let me know how ya get on with your test

well got up this morning and everything i have seems to be drying up ankle hurts on left leg ant typyping on the key board felt funny in the wrists

i also have a bit of a sikly feeling this morning

my body seems to have been ridled all over now since april when it started in my knees and walking yesterday was hard and me calfs where stiff this morning.

lost quite a bit of weight on me bum to i can nearly sit on my coxy bone.

everything on me seems to feel like fatty sponge in my knees

so im going to go for a little swim today later on then after i can lye down and watch the tv and ache ha ha.

cant half get ya down a bit this tired feeling you get to you find that after exersise etc or trying to do somthing.

ya type and your shoulders start to hurt.

i had a lot of stuff planned this year but it when streight out the window in april

i build classic motorbikes and have 2 other bikes going to get rid of some cos i dont think i will ride them again.

just sold a 1928 triumph to holland guy for less than it was worth.

im just plodding on to see the knee specialist hopefully in sept

rumi said i wont be seeing him again cos its patela tendonitus and i thought well why did it not show on the mri scan of the knee.

do you get any ringing in your ears from your noeck craking like i do?

and do you have any hobbies other than swimming.

i was thinking of putting a claim in for dla but i dont think i would get it

regards john

GreenFlower profile image
GreenFlower

Perhaps you shouldn't let the bikes go just yet. They're important to you and there's every chance you will achieve at least temporary remission of your RA. Some of my hobbies - walking, piano playing for example - are sidelined at the moment but I hope to get back to them. I'm doing well at keeping up the swimming (better than before, to be honest) and I try to as much stand up comedy as I can. My fellow performers are very understanding.

I do indeed have a creaky neck and ringing in my ears - tinnitus. In fact I have pulsatile tinnitus which means it sounds like a pulse. What I can hear is not actually my heart, although obviously it pulses at the same rate, but turbulent flow in the arteries in my neck. It isn't part of RA, in my case it is caused by high pressure of fluid in my head (incracranial hypertension). It can be caused by other things too. You ought to mention it to your GP and ask to have your eye retinas checked for signs of damage.

You might also want to look up the terms bursitis and fibromyalgia to see if the symptoms sound familiar.

Reading through some of the other posts on here I think you are right in thinking it would be very difficult to get dla at this stage.

minka profile image
minka

my doctor has said he has done all he can for me not impressed cos nothing showing up in blood but i here walking funy can make your ears ring

when i go swimming on me back the left knee goes all red and hurts with the exersise it didnt before this onset always had strong quads and sometimes when i walk to much i feel like the ankle is going to give on me.

if it wear not for that ankle i would walk i think quite a bit.

ive looked at all the sites you mention but when yo look at them you see things wich are your symptoms to some that ar not so you cant make a judgment can you and its no good asking thew doctor that tried ms even paid a guy for tests cos another knee guy i paid thought it was that now dont know who to pay unless i see anothe rumi doctor.

dont get me wrong ive come a long way since april or have i got used to it i dont know

but i do like playing with the bikes

thinking of taking the clutch down on the z200 to try to make it free up better dosnt mater how long it takes me does it even if a day job takes a week.

when i talked about brufen i tried some of this and it made me stiffer than i was but i might give it a worl today

just got some cider vinigar to try out again thats what i used before in 2005 when i had the old knee problem.

GreenFlower profile image
GreenFlower in reply tominka

Perhaps you could ask your GP or specialist what makes your case different from all those who are seronegative (have negative blood tests) but are diagnosed with RA on the basis of joint pain and damage.

minka profile image
minka

oh by the way where you at im at lowton nr warrington

minka profile image
minka

hi greenflower

im up this morning unstiffening got to go to the bank today so im up and moving a bit and i mean a bit

took some brufen to see if i can get a bit of relife made me stiffer this morning

ha ha

we all try dont we also going to go for a swimm latter if thias itching on me hands stop

hope you have a nice day today.

ps you dont tell me weather you are still working im retired now 62 nearly only had 18 months retirment before this kicked in

GreenFlower profile image
GreenFlower

Hi Minka, I'm sorry to hear you are still suffering with stiffness and itching. I have itching inside my fingers and hands today too but I ate quite a lot of protein rich foods yesterday so I expected it.

I will also be going for a swim after lunch to take advantage of this lovely day.

I work full time at a university, and intend to continue doing so if I can, but my GP has signed me off until Thursday. After that, I might go back to adjusted duties. Our Occupational Health Unit is very good and I will be talking to them at some point. I've ordered arthritis gloves from Amazon to see if they make my hands more comfortable.

minka profile image
minka

thans for reply greenflower

got some tablets called amitriptyline 10mg know these at all

GreenFlower profile image
GreenFlower

Hi Minka. I've never taken amitriptyline. I'm guessing you've been given it 'off label' for chronic pain. There's information here (check out all three tabs): patientslikeme.com/treatmen...

minka profile image
minka

hmm dont know if this is better aching or taking what do you think greenflower cant make out if 10mg good or bad i dont want to be sleeping through the day

i just want me body back

GreenFlower profile image
GreenFlower

Looking at that page I referred to I can see that more than half the patients in the survey had mild side effects or no side effects at all. The main side effect isn't drowsiness but a dry mouth and 10 mg appears to be a low dose so side effects should be minimal. It isn't addictive, as far as I can see from the information given. You must do what you think is best.

minka profile image
minka

hi greenflower

ya tried it last night gave me an extra half hour sleep thats all and i can still take me paracetomol and me bruffen with it

still sore and legs not working properly though if only me legs where working properly i could cope with the other bits better many thanks for the info though

regards john

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