Something is really wrong I need advice...

[louiseamos]

OK so had back props since 23.. Back op few year ago...been feeling in well for over a year..I've osteoarthritis.. In lower back!!my fingers have swollen bad..I've had Low white plates for 12 year????by way only found out few month ago..my wrist can't move much?I am having difficulty tipping this.. My muscles ace real bad.. If so much pain with back.legs.too start with..my physio thought I had a.s...back..I no I've soclisis of lower spine..?I saw a sepeclist whom thought I had lupus I've a rash pin pricks on tops legs..get red faced when feel I'll....I feel going around and up!down.?all my joint hurt swollen.. All bloods fine..he said its way more then m.e.fribo which some rumo said year ago...I can't bend my thumbs feel that swollen..been waiting since September to see another rumo.??? Help me..so scared.. Its all day now..the joints.fingers swelling never GOS.???any one same please...??

[louiseamos]

P.s just told my toes.fingers.lips were blue when seen this sepeclist.???? And ?

Yes they turn like mad when start too warm up

[misty14]

Hi Louiseamos

So sorry to read of your problems. I too have osteo-arthritis in my spine and have responded to injections as it can be very painful!. It sounds like you need changes to your treatment and it's too long you've been waiting to see a new Rheumy!. Could you ring the clinic and ask to be considered for a cancellation?. I've done this and often been lucky.Good luckX

[louiseamos in reply to misty14]

Hi..misty14.. Its bad worst ever been and the rumo.?well I only found ou t I was on a waiting list and was down for the 6 the Jan... Had no letter.?the gps rang Newcastle.?? I was only on waiting list....?sick..!!I my fingers are that swollen can't get my rings off.??my hubby has to push .pull.?me,out of bed....need a slide sheet..Dr spkicit... Who's sepeclist in m.e fribo...and other stuff..was very worried said I am too young ?????I am very, scared. Xxxxx bless you

[diane1428]

Yep that's exactly how I feel at the moment. Back is agony. Toes numb, fingers swollen skin sore.

I have found heat pads which are helping the back pain. For swollen hands and numb fingers I take hand warmers with me everywhere. Great... they are what fisherman use to keep their hands warm. Are very cheap and you can get them from any fishing shop.

Paracetamol is helping the pain a little, just takes the edge off. Now im waiting for my doc to send me to the consultant rheumatologist. Hopefully will be there within 10 days.

it is miserable so I have a pic of the grandkids next to me and that cheers me no end.

Its a new year try and be positive.

[louiseamos in reply to diane1428]

Orrr.bless.diane1428.. That's sweet..grand kids.....my kids killing me all fighting ..both hoys austic... Very hard.need help..you have my simptons too..yeah heat pads .hands very good..?I've found at pound land.?for hands, I am on morpie for back..isntndoing very much..?please keep in touch..let me. Knew how you get on...my back.? Hips??feel like in half.??good luck..I wil be thinking of you xxxxx

[Hidden]

I had very painful, swollen finger joints (the joints nearest to the palm ie knuckles and MIP joints are less likely to be caused by OA) and painful wrists when my RA got really bad. Between 25-30% of people with RA have sero-negative inflammatory arthritis and like Lupus it can affect skin, organs including eyes and also goes with secondary Sjogren's and Raynaud's. So you should really push to be seen by a rheumy again asap as it does sound like more than wear and tear arthritis even with negative bloods. I also have Osteoarthritis in my fingers, a knee and my lumbar region and find exercises that physio gave me really helps with this. Push your GP hard for another referral and look at NRAS re the importance of early diagnosis and referral and sero negative inflammatory arthritis to add weight to your insistence on another rheumy referral.

[louiseamos in reply to Hidden]

Hi..Twitchytoes.... Bless you for replaying.. Can't spell..I've been waiting since July too see a rumo.. Has the neurosurgery gp.?frist told my gp to. Send me.thank god my fingers.?toes were blue.?has never been this bad.? Fingers. Payer too see Dr spikit. M.e.fribo.. Etc ..lupus..but wants me to see a rumototigist. None up in my area....I've had low white blood platles for 12 year..my back has osteoarthritis... Bone extra stated growing before had my back op few year ago???this Dr spikit is very good.got a full hour..my lips were blue...my fingers sore.big...?my gp said no point having xrsys has no rumostoligist for miles.....going my gp this..going to see her..she thought I was going today that's why got me in too her later this week...all my blood comes OK!!!arrrrr!!!!!I wake in night crying can't move my thumbs...if knock my fingers worst on right arrr xxxxxbless it feels I've always been fobbed off....even my muscles hurtxxx

[louiseamos in reply to Hidden]

Twitchytoes.. Sorry to text you twice..your Simpsons sounds really same..lumber I've osteoarthritis.... Hip has been sore years..if lies on etheir hip in really bad pain..but has you will no if you lie for a while on back arrrrrr.... Why are my fingers swollen???? I can feel bone on most my fingers joint bit!!!its getting worse has was only on one..now most..can't bend my thumbs ...can't cope....crying now..soz...it was bad with my back now this ..oh my knees been sore years..no ones ever checked..my daughter toes go blue.face red.. I hope its not something bad..worried with white blood plates.... But gp said if was cancer etc would of showed its self how?????.. How comes all rest my bloods OK?????......wish I was normal...not copeing....well last RU!o I saw said I had fribo....dizziness etc....she didn't even look at me.....my back looks twisted.. One hip higher..scoliosis. I was told everyone has...??????xxx my fingers hurt to tipe...can't squish a cloth out only turned 39...... Soz just thought like you understand me xxxxxx

[Paul_Howard Partner LUPUS UK]

Hi louiseamos,

I'm sorry to hear that you are struggling with a flare of your symptoms at the moment. Do you have an appointment through for the other rheumatologist? Is there any chance you could speak with your GP about your current pain and see if they can prescribe a short course of steroids or something to help relieve the inflammation?

[louiseamos in reply to Paul_Howard]

Hi Paul..going my gp later in week...can go miles....away..going to have to...reason they wanted me to go Newcastle that's were neurosurgery gp was.....its real bad now.....my elbows..knees hips... They are going to have to cut my rings off for my x rays.. My gp said it might not even show any thing up........arrrrr

[louiseamos in reply to Paul_Howard]

Paul..need to ask!!you speck to everyone all sorts simptons.. Everyday....the finger..blood white platelets.... Sore bones what do you think wrong..I knew what's wrong with my lower back please any advice there...thankyou so much

[Paul_Howard Partner LUPUS UK in reply to louiseamos]

Hi louiseamos,

I'm not medically trained so I cannot speculate a diagnosis for you, sorry. You are experiencing some of the symptoms that are common in lupus, but they are not exclusive to lupus and do feature in other conditions too. Hopefully when you see another rheumatologist they will be able to provide some answers for you.

[diane1428]

No the feeling well. When my hands are realy bad (most of the time now) I use a gel that helps with the swelling and takes the pain away within 10 minutes. Im not sure where you are but im in England and the cream is called Traxam. Helps all joint pain. Only downer is that im not meant to use it with warfarin because it has nsaids in it. Shame atleast I get free of pain.

I have had aps and lupus apparently since I was 18 years old. I only found out last year and im 60 now. No doctor wanted to take me seriously for years. In fact 12 years ago my gp then said quality of life is best and put me on HRT. My specialist last year didn't know how I had stayed alive for so long as that was a death sentence to me.

Now I get up each morning normally in pain and refuse to worry about it. Im letting the medics do the worrying and im just concerned with living. If I can get pain relief In creams, gels etc. I take it.

Im going to get myself an inr machine soon then I wont need the docs other than my specialist at all I HOPE.

Keep your chin up lifes worth living even if we do feel like sh###t.

Regards Diane

[louiseamos in reply to diane1428]

daine1428.. Hi hun I am in Cumbria... I feel sxxx too....I am 39.. And my pain started when 23.. Chest!ribb pain...back..my daughter who's 14 tomora.. Was playing out side when 7/6 ish..came in face red raw.... Itch y skin all over...gets blue toes...GPS done seem too worried????. I hope they find out what's wrong with me soon!!!I've 3 kids...its hard..thank god..really my gp is back..believe me iI've had soon dam nasty GPS in my life time....like I just want meds....well don't....all I want is too knew what's wrong..I've kids that relay on me....got x rays tomora on hands fingers.wrists..but my gp told me might not show anything up...feel like my hands giving up if knew what mean..over even last two week spread too most fingers...I am on morpie for back.. And don't touch any pain now...orrr you sound lovely.!! I was a full time carer till year ago..I clean when can for my 90 year old granda..he carers for my gran who has dementsure.. I used to do all that and work 6 am till 10 at night..look me now xxxxd. Hey hey.....xxx god love yax

[diane1428]

Bless you, the problem with pain killers they stop working after a while. Try to rub in traxam for your hands. Its mild and you can get it over the counter. It will help I mix it with hand cream and when at my worst use it once every 4 hours. It does help really.

I refuse to go on any opiates including co-codomol or any form of morphine. Sometimes it is hard to move but I think because I didn't know what I had for so long I got a very high tolerance for pain so can manage a bit better.

I noticed over Xmas there are slippers you can put in the microwave im getting a pair to see if it helps with the reynauds. Ill let you know. Hand warmers are brilliant too.

Please keep your chin up you are all giving me such a lift now knowing there is a forum out there and I can talk to you all. Felt awful for so long with no help from anywhere you really are all a blessing.

Regards Diane

[louiseamos in reply to diane1428]

diane1428.. Orrr that's nice too knew too that theres others who are going though same,and care,,its my bone pain that keeps me on morpie.? My full bone.disc excured.!!and the bone sat above on my tail bone..and the jelly stuff out of disc a big chunk sat on my s1 nurve..causing lots pain..and the neurosurgery at Newcastle wanting to operat on me again. I could not sit..no way after my first operation !! Messt my back up.!!!I hate taking the stuff..?now my fingers are so sore the cramp the bone pain.. Swelling ..its like have to be careful jot too get my toes cold..I the burn ing......can I ask did the fingers come on fast.come to think as well when in my teens my face was all ways red..... I hated.?? But why are my bloods normal???? Do your musles hurt????xxx Louise.....soz just got loads stuff to ask..do you think I've lupus???

[diane1428]

ouch,bless yourheart.