I have severe pain but hardly any swelling. - NRAS

NRAS

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I have severe pain but hardly any swelling.

mattcass profile image
19 Replies

Because there is no visible swelling and this stage or bones sticking out or fingers bending you can understand why people think you are not as bad you make out,most of my pain is mostly around my arms shoulders and grion but mostly my hands and wrists, flare ups are very painfull for me to get used to, And i have been through the pain barrier with pancreaitis and frozen shoulders in the past but flare ups are a different experience for me no medication I take helps. Thanks for your help and advice,Mattcass

19 Replies
sylvi profile image
sylvi

Mattcaa,i understand what your going through because no amount of painkillers shifts the pain does it.Just rest and hope the next day will be better.xxx

Josie2 profile image
Josie2

I too have pain but hardly any swelling. I only swell in my fingers yet not my wrists.

Strange isnt it.

Jo

Xxxx

mattcass profile image
mattcass in reply to Josie2

Josie2.thank you, mattcass.

hamble99b profile image
hamble99b

for your hands and wrists you can be given splints by OT.

the £1 shops sell some supports that look a bit like fingerless gloves.

you can buy a wax bath with low-meting point wax - it's lovely.

have you got a tens machine?

sandra.

mattcass profile image
mattcass in reply to hamble99b

Hi Sandra thank you,Yes i do have a tens m/c i never gave it a thought .mattcass

I was the same when RA was more active - never showed much by way of swelling - it's hard being believed isn't it? Have you tried hot paraffin wax baths and have you seen an OT yet? These might help alleviate pain in the short term at least. Tilda xx

mattcass profile image
mattcass in reply to

Hi TildaT, I will try anything i have said i am not allowed anything for my RA the lung consultant refuses me anything the RA consultant recommends.

Do they communicate with each other about you? That would be helpful if so but probably too sensible for many consultants! Do you have a good GP? If so why don't you ask him or her to be the link and see if there's a drug you can take that doesn't impact on your lungs? Tilda

mattcass profile image
mattcass in reply to

Hi TildaT thank you,My gp is leaving the fighting to the big boys but is chasing them up for me he said.mattcass

SaraF profile image
SaraF

Are you not taking any meds then for your RA or am i reading that wrong?

If you are in pain then you need to have some medication to help relieve the pain, if the rheumy/gp is aware of your lung condition im sure that they wouldn't prescribe anything that would aggravate the situation.

Hope you manage to get the help you need soon x

mattcass profile image
mattcass

Hi SaraF, I am on is steriods for my lungs only but they are helping the joint inflamation slightly,the situation at the moment is my rheumy,lung, & gp are consulting their consultants in Edinburgh to decide what course of medication will be best for me.Mattcass

minka profile image
minka

yep that what i got of my gp well you have no swelling in any joints well i kept complaining about me knee and the only person that belived me was the phisio

and sent me back to knee specialist who said we will do another mri after 9 months i said had enough of this and he agreed to have a look in it

when all came to all acl half snapped and ball on medial side looked like the face of the moon and no one knew what did the pitting of the joint.

so just because you have no swelling keep on at them cos it might not be rumi but another inflamatory type of autheritus

ps im on no meds just the paracetomol and feet hurt like mad and go cold

which also means you cant even trust an mri scan if it cant find that to

took me nearly 12 months to get listened to

mattcass profile image
mattcass

minka thank you, 8 months ago when i brought it to their atttention that there was somethning wrong RA wise very stiff & sore in the morning, they put down to my age and because me & my wife walked 8 miles everyday, then i was getting atttacks on certain parts they kept looking for the easy explanation, grion strain,reaccurence of a frozen shoulder then 4 weeks ago i was diagnosed with RA and all that time the RA was making my lungs worse.so the last 2 hours i have phoned all consultants dealing with my problem & to get a solution a.s.a.p.

mattcass

Hi Mattcass, Keep at your consultants. I too have a lung condition as well as RA but thankfully with good drugs and a nebuliser , my lungs are doing really well. I too am not on any medication for my RA as they can't find a suitable drug for me. It's been 15 long months. It helps me when people tell me they don't always have swelling but lots of pain. I thought I was going mad!! I am learning to fight my corner and I also have emailed my consultant if not happy. At the end of the day I know my own body and it's no fun being in constant pain for 15 months!!! Really hope they get you fixed out. If your consultants don't communicate, take copy of letters to show chest doctor. I always do and they always take copies. Worth a try. Take care

mattcass profile image
mattcass in reply to

Hi uis51 thank you, the rheumy consultant has more or said the chest consultant has the final word on what medication i get as he knows the condition of my lungs,

mattcass

Victoria-NRAS profile image
Victoria-NRASPartner

Hi Mattcass

It sounds like the chest consultant is blocking you from having anything to control your RA, but if your RA is left poorly controlled this can have an effect on the lungs. Hopefully the chest consultant has enough of an understanding of RA to know this, but I wonder if it's worth getting a second opinion from another chest consultant. I've spoken to lots of people with lung problems who are on RA medication, but of course every situation is different and it may be that there really isn't any RA medication that is appropriate for you to take, but a 2nd opinion could either put your mind at rest that this is the case, or potentially give you some other options, so perhaps worth considering. A 2nd opinion can be arranged through your GP and wouldn't mean that you stop being under the care of your current chest specialist.

Kind regards

Victoria

(NRAS Helpline)

mattcass profile image
mattcass in reply to Victoria-NRAS

Victoria thank you.The chest consultant is in fact consulting his senior consultants and awaiting word back from them.

selina profile image
selina

I read other replies with interest as I often feel bit of a fraud with no swelling or disfigurement (as yet). The flares & fatigue still happen. guess the medication suited and caught the disease early. Hope you get a solution soon x

mattcass profile image
mattcass in reply to selina

selina thank you,

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