Help some advice please, confused Arthritis newbie

lisap2112

It was recently confirmed i have some form of Arthritis but my Rheumatologist is unsure which one yet she seems to think its post viral or RA, although none of my symptoms fit post viral and my OT seems to be leaning more towards RA.
Almost 2 years ago random pip joints in my finger started swelling, morning stiffness and general aches and pains, loss of grip and power in both hands. My GP referred me for an x-ray which came back normal but as the swelling & pain continued she referred to me to a Rheumy who sent me for an ultrasound, this showed the sac fluid and confirmed at the moment mild Arthritis. All my blood test have come back normal, no inflammatory marker although i do carry the RA gene, so she is not willing to confirm RA or start me on any meds as i am only 30 and they can affect fertility so all she can advise at the moment is ibroprofen which i cant take as it brings me out in hives.
I also have tennis elbow in my right arm which started in June this year and seems to be unwilling to get any better, my OT & Physio have both said this can be part of the Arthritis but cant be certain, i also have stabbing pain in my right wrist and it takes a while for my feet and ankles to get moving in a morning, the pain and stiffness become worse when cold and also after long periods of activeness followed by long period of rest, so i have now been advised by my OT i can only work every other day due to the pain and extreme tiredness.
Yesterday i noticed a pattern, as i believe it is spreading to my right knee when it spreads to a new joint, the joint becomes tender to touch, i get flu like aches and pains in my neck and shoulders and a week later it becomes inflamed, from then on the effected joint either swells aches or hurts everyday there isn't a day i don't feel it although the degree of pain, swelling and stiffness varies.

Sorry if the above seems to not follow on or make sense there is just so much to tell, you after 2 years, i suppose my question is does it all sound the normal process as no one seems to be willing to pinpoint what is wrong with me, all i know is its a scary and confusing time, i almost feel people don't believe the pain and tiredness or that i'm imagining the symptoms.

suzygirl

Hi and welcome to the site. I am slightly confused :oops: as to why you are not on any meds other than ibuprofen? Has your rheumy seen the swellings etc? If not take photos to show them, note your symptoms, how regular, how long the stiffness etc and the pain.

It can take a while for it to show in the bloods for some people. I would make an appt with my gp to discuss what is going on and see what they think. Then you can either ask for a seconnd opinion or be firm with your rheumy and ask for a treatment plan.

lisap2112

Hi thank you for replying, yes she has seen the swelling, she just seems very reluctant to start any meds, the last time i saw was in September, she said to write a diary of a week with painkillers and a week without, she referred me to Physio who sent me onto OT who i must say is an amazing help i have lots of gadgets to help me round the house.

My issue is while i am not on any meds, random joints keep swelling its moving round my body attacking me at random and from what i understand the damage to the joints is irreversible, the meds can help slow it down.

All she seems to do is send me for more bloods and to go back at 6 month intervals to see her again at which point something else has swelled, while i understand there are people a lot worse off than me, it still hurts and interferes in my daily life, my 12 year old daughter has to open pop bottles for me!!

Its confusing and frustrating, maybe i will go back to my Doctor and discuss another route of action or second opinion, does everyone go through the same drawn out process?

CJHunter

Hiya, am soory you had to find us but here you are and Hello

I think you need to go back to see G.P and explain how things realy are (mention daughter) and get an emergancy referal to rheummy. You need something more than Ibru, cant believe you have been left like that.
If O.T is so good ask them to help with writing what they see and how you manage.

Hope you call them asap and get the support you need.xx

valval

hi i can not understand why you are not on meds the inflimation (swelling) dammages joints you need to see another rhummy for second opinion just to be sure you are getting right treatment.
the exhaustion and stiffness is so hard to cope with ask doc for naproxen it also an anti inflamation tab that might work for you val

cutieclaire

Hey welcome,

I am wondering also why they haven;t put u on any meds, but are they still investigating things, as I was left in pain until they were happy to diagnose and then they gave me the works.

Hope its sorted very soon, as living with the pain is horrible.

Love and hugs xxxxxx

lisap2112

Hi all thank you for replying and making me feel welcome, i have another OT appointment next Friday so i will discuss with her what she feels is the best course of action, i may ask her for the rheumy's number as she has all her details on my referral form, she has mentioned before that i could possibly book an earlier appointment if needed.

Just out of interest, do any other RA suffers also have tennis elbow or is it just me?

CJHunter

Hi, I dont have R.A, but are u sure its tennis elbow and not arthur??

I personally wouldnt wait til next friday and would call hosp monday. The reception will always put u through, good luck.xx

lisap2112

I'm pretty sure it's tennis elbow, it was so painful the morning it happened I went to the hospital, I told them about my arthritis but he said it was rare to get arthritis in the elbow so he doubted it was related, I've seen various doctors about it since and they all say it's not related too. It was my physio who said it could be related and my OT said I wouldn't be the first person she has seen with Arthritis and tennis elbow at the same time. So I now think it is tennis elbow but I think it's all linked somehow

jillyb1

Welcome , just a quick comment on the elbow ; sounds like arthur elbow to me . I'm a RAer , have been for 31 years and I have it in my elbows . Not a doc but pretty sure you can suffer from it in anything that ressembles a joint , including the jaw where I also have it . Go back and get checked out is my advise ! Jillyb

millie78

I too get ra in the elbow. I don't recall my rheumy saying my meds affect fertility. I'm on hydroxychloroquine and take diclofenac . Look up palindromic rheumatism I've just learned that was what I had which has now turner into ra your symptoms sound similar.

Keep pushing until u get the help u need. Best of luck x

traluvie

Hi and welcome from me too..

As the others have said it sounds like you are suffering and should be having more help with controlling your symptoms.
I have some form of inflammatory arthritis and i have it in my elnows and can be very painful at times so it is possible..
Hope you get something sorted soon, were here to help if we can..x

lisap2112

Thank you all for your replies and caring, its nice to know i'm not alone, although i have a loving and supportive family its hard for them to truly understand the struggles we have to face on a daily basis, not just physically but mentally, its an awful disease that frustrates me beyond belief and leaves me feeling lonely and useless, its nice to know there is somewhere i can come for support and or a understanding which only other suffers can give.

Thanks

Lisa x x

dreamdaisy

If there's a joint it can be affected by arthritis. It matters not if it's a knee, a hip, an ankle, a wrist, the jaw, the neck, if it's a joint it can be affected by arthritis. I think you need to see a rheumatologist and the sooner the better. Start keeping a diary of what is happening to you, which joints are affected and for how long, tiredness levels, pain levels, what aggravates matters and what eases them, this will give him a better picture of what is going on with you.

I began with one affected joint fifteen years ago and as time has passed other joints have joined the party, but never as rapidly as seems to be happening with you. I believe there are over 200 forms of inflammatory arthritis and it can take some time to narrow down the type that is affecting you. Everyone's arthritis is different although the labels are the same, one person's RA is not quite like another's. Please go to your GP as soon as you can and ask for a referral to a rheumatologist: they are the ones to help and advise as this does sound to me like an immune-based version of arthritis. I wish you well and do keep in touch. DD