Struggling

[Millie66]

Just over a week until my first appointment with Rheumatologist but having more bloods on Thurs so have cut down on Naproxen. I now have terrible feelings in my legs ankles, wrists and hands.

I have been looking at the posts on here and am finding it overwhelming. So many different symptoms not sure if i can find mine? All I know is that pain and tiredness has consistently got worse over the last months. But I am not convinced completely that it is joint pain more tendons and the pain doesn't always stay in the same place? However definitely have a swollen knee?

Any other pain relief I can take that doesn't interfere with tests?

Thanks

[JulezH]

Isn't Naproxen an anti-inflammatory? That will definitely affect your test results, switch to paracetamol based drugs like co-codamol (GP can prescribe some heavier dosages of that if your pain is as bad as mine can be).

Hot water bottles/electric blankets on the bed/hot baths/hot drinks are the way that I make it through the day, that and an occasional massage.

On a side note, you can go back to your GP about the pain that you think is not related to your RA, they will send you to a physio appointment which can take weeks, a quicker way is to pay for a private appointment if you can (around me in South London it is around £55 for an hour) and then they can tell you if it is muscle related.

Hope you get some relief soon.

[Millie66 in reply to JulezH]

I have been taking Co codamol but I was told that the codeine part is also anti inflammatory. Is this so?

[JulezH in reply to Millie66]

Not as far as I have been told, it shoudn't affect your test results but worth asking your doc when you see them.

[nomoreheels in reply to Millie66]

Co-codamol is a pain killer, a combination of 2 analgesics (paracetamol & codeine). It's one of the 2 meds my GP prescribed after the blood test came back positive for the time leading up to my diagnostic appointment. She recommended stopping both the anti-inflammatory & pain relief a couple of days before as one reduces inflammation & the other obviously would dull pain & you need the ooo ahhh factor when being examined so the tender joints are, well.... tender!

[helixhelix]

Everyone's a bit different with this disease so don't worry about not seeing anyone with the exact match to you. But if it is RA, then tiredness, and pain that moves are both classic signs, plus stiffness and swellings. By the time I got to my first appointment all I knew was that I was so tired that I could hardly think straight, and I ached all over without being able to pinpoint that many exact spots.

Not too long to go now, so hang on in there. And the non- chemical things are good, heat, cold, body pillows, gentle compression gloves/socks, early nights, green mussel gel.

But it is overwhelming at first, so just focus on looking after yourself and ignore anything that doesn't seem immediately useful to you right now.

[swisslass]

Hi I know what you mean about overwhelming - I could spend all day reading posts and at the end still feel confused! I limit myself now !

I also had moving pains at first about 2 yrs ago now, knuckles and wrists then whole hands and the odd knee came and went in no particular pattern. But it eventually changed so my hands and feet ache all the time, but luckily for me I can still do most of the things I did before. I also felt it was more tendons than joints at least in my wrists. So your symptoms sound very much like mine were. I diagnosed myself - (Doctor Google ) told my GP I thought it must be RA even if all blood tests were negative and he must refer me to a rheumi.

Hope you get sorted soon its an awful time, I felt a bit better after finally starting on meds and meeting a couple of other people who have RA. and seem to cope OK.

Sorry dont know about pain relief I just take Ibuprofen.

Hope your first appointment goes well I start writing my questions down weeks before so I dont forget anything.

[Millie66 in reply to swisslass]

Thanks I am in a bit of denial, I keep telling myself it's a virus or something but what you are saying purchase symptoms are /were similar. What treatment are you on?

[swisslass in reply to Millie66]

You sound like me as I had cystitis 3 months after the first swollen wrist / hand which I thought was tendon problems from over use. Then had to have 2 lots of antibiotics to fix the cystitis - in the middle of this i developed a bad knee out of the blue, and hands knuckles became swollen so after checking Doctor Google I thought it could be reactive arthritis and hoped it would all go away . Unfortunately not but I think the cystitis caused it to flare up. Really makes no difference now ! I started methotrexate March 2015 a year after 1st symptoms as my rheumy was not sure it was RA ( bloods all normal) .Also broke shoulder so delayed starting the MTX. I had 15 ml injections for 10 weeks then stopped due to dizziness which probably wasnt from MTX after all. Then in June started Leflunomide which I have taken until now . Not a great deal of improvement so have decided to give MTX another go and if that is no good will go on Biologicals. I live in Switzerland pay a fortune in medical insurance so if my rheumy says OK I can try it -probably Humira. Incidentally at the beginning my GP thought it was fibromyaglia but rheumy said not with swollen joints / tendons.

So after the longest post I have written yet hope you can get sorted. Hope you have a sympathetic caring rheumy- helps alot.

[Millie66 in reply to swisslass]

Strangely enough I did have a mild bout of cystitis myself and your symptoms sound similar.

I had an op on a frozen shoulder 2 years ago then the other shoulder started playing up I thought that was over compensation? Then supposedly Morton's neuroma in my foot.

I asked many a time if any of these were linked and the Gp said no just coincidence. I wish they had done the blood test sooner.

Oh well at least I know I get some mild relief from painkillers.

But obviously concerned about other meds. Seems that there are so many scenarios and side affects!

Switzerland is a beautiful country and yes very expensive.

I only have stayed for 2 nights in Basel.

Do you think the cold makes any difference to your symptoms?

Ps my longest post!

[swisslass in reply to Millie66]

Hi no I dont think the cold makes much difference to me.

Even if you had the blood tests sooner might not have helped, mine showed negative or normal to everything and still does. Esr levels just slightly raised sometimes. My rheumy just decided must be an inflammatory arthritis possibly RA after at least a year of symptoms, and to give MTX a go.

Yes the meds are frightening -side effects to make your hair stand on end! I just try and tell myself many people are fine but we are not meeting many here as they are too busy getting on with life. I got in a state before my 1st MTX injection but I survived. This is a great place to find info and help- some well informed, sensible people out there who take the time to help.

Interested to hear how you get on.

[Millie66 in reply to swisslass]

Thanks for the reassurance, I have a friend that has had Ra since a teenager. Her response to my diagnosis was interesting. She sort of shrugged her shoulders and said I would be ok and carried on with a different conversation. She is on Sulfasalizine. I was a bit upset at her response as I thought she has forgotten what it was like to have these awful symptoms but then I thought she has a forfilled life, works and has recently had a couple of babies ( she is younger than me) so I figured the meds can't be too bad?!!

At this mo I just want to be less of a burden on my partner and be more like me.

So if drugs are the way to go so be it.

Did you have any immediate side effects to your initial injection? I am self employed and could rearrange my appointments if I knew I needed a bit of recovery time?

[swisslass in reply to Millie66]

After the first injection in the morning I was feeling a bit nauseous by night, and the next day it wore off. I think I could have avoided this if I had taken the folic acid before. Folic acid I took twice a week starting 2 days later. Otherwise I was OK apart from the dizziness which started but I am going to give it another try starting in Feb.

I have no experience but I gather sulpha.... is one of the milder meds. Maybe your friend has mild RA there seems to be huge variations ! But there are lots of people here who know more than me.

[sylvi]

When you see the rheumy ask them about fibromyalgia as it sounds like that to me.You are right to stop the naproxen even though your in agony,at least the rheumy can see you at your worst. Take someone with you as they will take in more than you will. I hope it goes well for you.Hugs.xxxx

[Millie66 in reply to sylvi]

I am going to take the Naproxen for the next couple of days then stop again. I am in agony. I had bloods done yesterday so I figured I could get away with a few more days of painkillers for the consultant?!?