Still trying to find answers

[Franbie]

Hi. I have been looking and trying to answer others when I can but haven't blogged for a while. Anyway further to the lump on my wrist went back to doctor who was very shocked about how the rheumatologist spoke to me, he couldn't understand why he didn't take the report from the radiologist more seriously. He sent me to see a wrist specialist to see if they could operate. Went to appointment & the doctor tried to get some fluid out, (wow that was very painful) but couldn't. He was very nice & so helpful, he also felt that my hands show signs of RA. He has now referred me to a trauma & orthopaedic surgeon. I am having a scan next week & then seeing the consultant a couple of weeks after that. The thing I am very worried about is if I do have RA and this particular rheumy is not willing to take all the other doctors words seriously, is he doing me harm? Would I be having an operation or should I be on DMARDs to stop the damage to my hands & feet? Would DMARDs make the lump disappear? My hands are getting worse much faster nowadays, both thumbs are bad, I have around nine lumps on my knuckles, non on the tips all are on lower knuckles. I wake in the morning & it takes me a long time to do anything in the morning. I ended up in tears the other day because I couldn't even open a bag of salad & this was in the evening. Added to all this is the fact that both my shoulders are giving me hell now as well. Sorry about the long moan, it definitely helps to get it all out though! Franbie x

[Hidden]

Speak to GP

[Franbie in reply to Hidden]

Thanks Summer I will do that. Franbie x

[tessintrouble]

ouch! I had fluid taken from my knee a few years ago, my sister was in the waiting room and cried when she heard me yelp! I don't really know what to say about your rheumy, some accept that you know what you are talking about and others are very old fashioned and think you are undermining them if you ask certain questions. I would contact the rheumy dept and ask to see another one, they are paid to help you, do not be intimidated by them. Get a second opinion on surgery as well x

[Franbie]

Thanks for the reply. I will try & get a second opinion, I am so unsure about surgery. Since this all started, I have had operations on my jaw, my shoulder, & my thumb & I still get pain in these places. I am also on my own so it would be very difficult to manage after an op. My GP is good so I will go back & see him. Franbie

[Hidden]

Sorry if this sounds ignorant Franbie but with all these operations surely it would have become clear what type of arthritis you have? I thought RA showed up in joints quite differently to the way that OA shows up? I would push for a second opinion because if it is inflammatory it's important to get a diagnosis and treatment as soon as possible. Tilda x

[Franbie in reply to Hidden]

Hi Tilda. I didn't make it very clear I am under a rheumy for fibromyalgia & osteoarthritis. The reason I was sent back to him was because of the lump on my wrist, a consultant radiologist suggested that it was an inflammatory process with corrosion underneath & said on his report to refer me to a rheumy. There is also a strong family history of sero-negative RA, my farther, my sister & a brother all have it. So my GP referred me back to rheumy & before I even sat down for my appointment he said "I don't know why your back I haven't changed my diagnosis", I pointed out that I was back because of the radiologist report to which he said "he can't diagnose you". I was so shocked that I just didn't know what to say. Went back to GP & he sent me to a wrist specialist. The reason I am worried is because as you say it's important to get treatment asap for RA. I feel like my hands & shoulders are getting really bad, really quickly now. Whatever it is it's picking up at a great pace. The wrist specialist decided to send me to the trauma & orthopaedic specialist because of all the problems with my hands. I am terrified of having another op, I suffered quite badly after the last one. I will see the specialist in a few weeks so I will wait & see what he suggests & then as you say I will ask my very helpful GP to refer me to a different rheumy. I know there are people on here with far worse conditions than me & I feel bad moaning but I was having a particularly bad day yesterday & trying & failing to open a bag of salad was the last straw. Thanks so much for reply. Franbie x

[Hidden]

I think maybe your rheumy is keeping you away from the DMARDS so he can get you operated on quicker, a lot off RA drugs require coming off them for a month or more before you can have any kind off operation so maybe this is his reason.

Can I suggest you phone the nurse at your rheumatology department and explain your worries, I always do if I'm not happy with what the rheumatologist has to say, and I normally get a prefer explanation why etc.

Take care I know how painful getting fluid extracted is, I've been peeled off the celling a fare few times :/

[Franbie in reply to Hidden]

Hi thanks for the reply. I have replied to Tilda above with the whole story.Sorry I was having a rant yesterday. As I say I haven't been diagnosed with RA yet but all the symptoms that my sister had I now have. I have fibromyalgia but ibuprofen is not helpful for this, however, I am on 2400mg a day and if I try to cut it down I suffer really badly. The rheumy a while ago said that he would try me with a whole body steroid injection to see if it helped & was therefore inflammatory. Well I felt great while the steroids where in my system, I had not had such relief in 13 years but the rheumy still doesn't consider it to be RA.. Thanks again. Franbie x

[Hidden in reply to Franbie]

Hugs hope you get some relief soon

[Franbie in reply to Hidden]

Hugs back x

[Hidden in reply to Franbie]

Thanks Franbie they are well needed today

[allanah]

I sometimes ring the rheumatology nurses helpline as they are good at explaining the ins and out of treatments. I first saw a Rheumy years ago who said I didn't have RA but had osteo. It wasn't till I woke up in swelling and pain that they took me seriously as RA and osteoarthritis. So I personally would ask for a second opinion, take someone with you to that appointment and keep all your photos to show them the problems. It's a shame we have to keep plugging away at it, but that seems to have the best outcome. Hugs xx

[Franbie in reply to allanah]

Thanks Allanah. I did take photo's & a few days of pain diary but I didn't get a chance to give them to the rheumy. I haven't noticed warmth in my joints before but the lump on my wrist gets quite hot & now the other side is starting to come up with a lump & is also getting quite hot as well. I will have to try & get a second opinion as you say & keep on plugging.Hugs back xx

[Kathyfitz12]

When I was first went to my GP with painful hands she told me I should expect aches and pains at my age (59 ) & to take Aspirin. I insisted on a referral to a Consultant rheumatologist and it was confimed that I had sero positive RA.Now many years later I am controlled on Mtx - but I hate to think what state I would be in if I had listened to that GP. Ask around anyone you know who has RA and who has a Rheumy they truust, and ask your GP (firmly) to refer you to that Consultant. With all the changes going on in the NHS we are all going to have to be much more pro-active in obtaining the right treatment for RA. Good Luck...

[Franbie in reply to Kathyfitz12]

I've had more or less the same, not so much from my GP but the other departments I have been to including the rheumatologist they have said it's your age & in the earlier years they also blamed the menopause. I am 59 as well, going to be 60 in a few weeks. My older sister who has RA is doing well on Mtx. I will definitely have to be more pro-active as you say. Thanks very much for your reply & hope you are ok.

[Kathyfitz12]

I am one of the lucky ones who reacts very well to Mtx...............I tried other meds but they

all made me nauseous - only thing they were good for was the waistline as I lost a ton of weight feeling so sick!! I find if you show that you mean business and are not going to be put off the RA depts start treating you like a grown up and stop the "let's pat her on the head"

attitude.

I am off to Italy in a couple of weeks and I am so thankful that with Mtx I can be 90% sure my holiday won't be spoiled with RA pain. I do hope you are soon setttled with a professional and kind rheumatologist - mine is very caring and seems to understand that being over 60 doesn't mean withdrawing from life beacuse we have RA.......Ciao Kathy

[Franbie in reply to Kathyfitz12]

Thanks Kathy. I am sure I will find a better rheumy soon, the last one won't be hard to beat. I'm going to see my sister in Menorca in September so I'm saving a steroid jab till just before so that I can have a good time. Hope you have a really great holiday. Franbie x