Crunching & painful wrists, knuckles and now shoulders :0( so fed up!!

[Jillybean1983]

Hi everyone, I haven't posted for a while but I read all your posts. I am really struggling at the moment, I was diagnosed in March this year and started on 20mg Metoject, Tramadol & Naproxen. When I was initially diagnosed it was Sero positive and only in my knuckles. Since then my wrists have joined in, I have bursitis in my left elbow and 3 weeks ago my shoulders started my left side (knuckles, wrist, elbow and shoulder) are a lot more painful than the right. I rang my Rheumy nurse who said RA doesn't affect neck & shoulder (where I'm describing) when my shoulder first started I thought i may have slept funny and dismissed it but its getting worse, I feel I have no 'medical' support and feel I'm bothering them when I have a flare. My husband is very supportive and understands the whole disease (maybe not the pain) but at the moment I feel like a 70yr old not 30yr old with 2 children under 6!! I feel down in the dumps to say the least x

[allanah]

Arrange to see them and show them that picture! Also if they check ur bloods I suspect that despite your treatments your inflammation might still be high. Bite the bullet and ring the Rheumy helpline and tell them you are glaring and need help.

As they r so swollen maybe cold packs will help ease the pain and u should ask to see the occupational therapist for work and resting splints, I think, cos they helped me. My doc changed my drugs after about three month if they hadn't helped and also gave me a steroid to reduce the chances of the inflammation causing potential joint problems.

Sorry to hear you r going through this, remember we are here for you, sending hugs xxx

[Hidden]

Sorry to hear and see you are suffering. Have you been to see your GP - I think that would be the first port of call? They may be able to recognise what is happening to you and get you an accelerated appointment with the appropriate specialist.

I have a different form of RA called enthesitis, which affects not the joints but the insertion points where tendons and ligaments connect to the skeleton. It can occur almost anywhere and I get symptoms in my neck and shoulders too. But my hands are not inflamed like yours

[Trulyfedup]

Im so sorry to hear all this, you are in a bad way. I know what you mean about - that you are bothering them when you have a flare - ive had R/A for over 8 years and most of the time i feel as if im being accused of something but i do have a wonderful GP. It depends what clinical nurse you see, ive had those who are lovely, those who are like ice....and that doesnt help when you are feeling low. Ive just come back from hosp after being told im off MTX and infliximub as body isnt coping, not looking forward to whats around the corner. I have it in my shoulders as well, its bloody painful also im sero positive (never found out what that actually means. Unfortunately, it is a progressive complaint. All i can advise is to keep on at them have you got pain killers that work for you? Mary x

[Jillybean1983]

Thanks Allanah, it's so frustrating I feel like I'm just another case number and I don't 'fit' the criteria if you know what I mean. My ESR and CRP have never really been high they are within the normal range but ultrasound shows the thickening and damage. I try so hard to grin an bear the pain but its getting too much to hide, I'm constantly snapping and have no sympathy for anyone who's complaining they have a cough or cold and it's just simply not me! My whole personality seems to have changed since this all started. Thanks for reading my ranting xx

[allanah in reply to Jillybean1983]

Well with those pics you fit the criteria I think , if not for biological , mAybe they would consider changing your dmard to one that is more effective for you? I started on mtx but it made me I'll so I got changed to sulphasalasine then Arava. But in general I find my gp just tells me to ring the Rheumy helpline as he won't change drugs without the consultant advice, but my Rheumy team are great and looking at how bad u r I bet they will be if u ring them, get up the nerve and ask for help.

I also get enthesis, inflammation were the ligament meets the none into back and shoulders so I would if I were u, contact them , tell them what painkillers u r resorting too and how upset you are, how it is changing your mood and character and what can they do! I would be surprised really if they don't help ! Xxxxxx

[Hidden]

Oh Jilllybean I know the feeling re lack of sympathy for others and just feeling it's an uphill battle to get any support - personality being changed etc. I really think you should start with your GP - those hands look terribly swollen so please take these photos with you and show them. It seems you need your meds adjusting to me. Tilda x

[Jillybean1983]

Thank you for all your lovely kind words, it's heartbreaking to feel so low with such a great family behind me but it all gets too much at times. My GP cant alter meds only my rheumy nurse will change them, I am booked into see my Rheumy nurse on the 22nd Oct but you can guarantee that I won't be half as swollen yet the pain remains the same :/ x

[allanah in reply to Jillybean1983]

Just take the pictures and a pain diary ie how sore u are eg on the morning, how foyer u need painkillers, that u can't opens door etc xx

[Rosie_rabbit]

Jilly everyone's offered some great advice so just wanted to add that you definitely can get it in your shoulders. You can get it in the actual joint and then as the others have implied inflammation where the tendons and ligaments join your shoulder. RA as I'm sure you know causes inflammation in other parts of the body as well as joints and tendonitis is quite common I understand. I get this horribly in my shoulders and it affects my sleep, which then affects everything.

Be brave and strong with the rheumy nurse take your husband with you if you can and definitely those photos. You've got to live with this not the rheumy nurse and it's you that is suffering. Take care and cuddle those gorgeous babies of yours when you're feeling low, that's what I do, never fails. Rx

[mitzymoo]

Hi to all you angels

This weather is evil when it comes to our bodies, we suffer enough without it making our lives unbearable!

I am a big believer in angels and I have a special poem that I give to people who are in need of some comfort and support, so this is to everyone who is in need of a big gentle hug.

When angels sense you need them

And angels always do

They come unseen from everywhere

To help and comfort you

They hover close beside you

Till all your cares are gone

Till they can see you're ready

Once again to carry on

Then some of them fly away

And take their gentle touch

To other hearts that need the love

Of angels very much

But one at least stays with you

As your constant friend and guide

For guardian angels never leave you

They are always by your side!

Take care and angel blessings to you all xx

[frankiedoodledandie in reply to mitzymoo]

Hi Mitzymoo, What a lovely poem I hope it helps EVERYONE who is suffering from this terrible illness. I was diaignosed on the 4th July I have been on Steriods and MTX. I finished the Steriods on Friday and I take 6 MTX every Saturday. Since I have stopped the Steriods both my hands wake me up in the night they are throbbing and so painful. I get our of bed (with difficulty now) and fill the sink with warm water for some relief and the take two 500g Paracetomal. I am hoping that the Mtx will soon take over and that I will not need to go on Steriods again as I get some bad symptoms from them. I am over in Spain at the moment and I am hoping the heat will help but I have only been here a few days so I must be patient. Before I was told I had R/A I went to the Gym walked a lot was 8st 3lbs at the moment I am 9st 6lb and only walk for10 mins. I also feel I am not the person I was a few months ago and at times feel very tearful as I find friends and family dont really understand how I can feel and suggest going out for dinner ect but sometimes I feel so weak and tired they just look when I decline. I have said before on this site that I am so grateful to everyone who can understand and we all know what we can go through and it makes this illness a bit more easier to bear knowing that their are other people like myself.

Warm Wishes to you all

Frankiedoodledankie

[mitzymoo in reply to frankiedoodledandie]

Hi Angel

Your welcome, if you can print it out and put it where you can get most comfort from it!

I lost the feeling in right side of my face after a having one of those really bad laughing fits that result in struggling to breath then coughing. (girly night and gunny film) the gp said it was neuralgia and would tter in 4to6 weeks. A few days later i choked on some food and the right side of my body went numb. Mri was clear i hadn't had a stroke, but 9 years on i still have no normal feeling in that side!

I have pain sensation from joint and muscle pain but i can cut, burn, scold and part of my right side and feel nothing! The dentist can do fillings without needle which i'm pleased about as i hate going for treatment if i need the needle.

When the temperature drops suddenly i get horrible pain in my right arm which is called phantom limb pain. I woke up one morning to find i had gouged and scratched it in my sleep and went to my lovely gp who put me on gabapentin 400 mg, i have to wear gloves in bed to try and ease my symptoms, my lovely hubby bought me a rechargeable hot water bottle from amazon it is heavier than a water filled one but charges in 10mins and stays hot 4hrs!! It is an investment at £30 but great chrissy prezzy!!! Link below.

amazon.co.uk/Brand-Generati...

My hubby just got me one for the bedroom to save carrying it upstairs as he works away alot but my kids are 22 and still at home to look after me, bless them.

I put it in the v of my v pillow and get snuggled down bliss!! Only problem is i keep hubby awake with my snoring (shame pay back for all nights he kept md awake).

Keep in touch angel please, i'm a good listener if ever you want me, and got lots of other verses.

Take care and lots of gentle hugs and angel blessings xx

[nellysgran]

What a beautiful poem, yes I believe in angels too,...... Jilly yes you can get it in your shoulders which as I know is very painful, and your hands look like mine do every couple of weeks, its my right wrist hurting at the moment, I have an appointment with my consultant on 30th and I am deffinately going to ask for my meds to be changed, I hope you get some comfort when you go, be strong, take the pictures, and tell them exactly how you feel, let us know how you get on,

Gentle hugs Wendy.xx

[Jill60 in reply to nellysgran]

hi Nellysgran, my wrists hurt so bad, along with my fingers, my thumbs are very painful, and elbows are excruciating, yet I'm on MTX, worried my thumbs and fingers will get gnarled, thumbs are already large....I have trigger thumbs and in all fingers.....had both shoulders operated on due to bone growing and trapping the tendons......anyway, what type of meds are you taking?...also what meds do you take? I use to be on Enbrel, but I got ill, and was taken off them, but have an appointment with rummy soon......your comment to Jillybean was spot on....

[nellysgran in reply to Jill60]

Hi sorry I am late in replying to you, I am on 20mg MXT, Sulpha and then Hydroxy was added in June, but I don't think the Hydroxy is doing anything.

[Jill60]

Hi jellybean......wow the pics of ya hands are sooo bad, I think we get use to seeing our own hands that sometimes we don't really 'see' what we really see, if u know what i mean.......they are bad.....u must see someone, you shouldn't be suffering like that..before I went on Methtrexate! I too had hands so swollen.....but since being on that and then Enbrel, Biologics, they never got that huge again.....yes I still get flare ups, and still a lot of pain.....but you truly need help like now......never feel you are putting anyone out, nag them if u have to ok....the guys and gals on here have given you fab info, so I won't nag on.......just remember we are all here for you ok xxxx