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Can anyone talk to me about rheumatoid arthritis? Feel very low

(13 Posts)
hilbobaggins Sun 08-May-16 15:00:45

Hello, Is anyone else dealing with this illness? I was diagnosed two weeks ago after eighteen months of horrible pain and discomfort. When the consultant finally made the diagnosis I felt on a weird high because I finally had a reason for feeling so awful if that makes sense. He gave me a steroid injection and I have started methotrexate and folic acid and another one, hydrochloro something or other. I have been feeling better physically since the steroid kicked in but this weekend I've been feeling very down. Everyone I have told says it's great to be diagnosed and how great that I now know and can take meds which is true, and I know this isn't the worst thing in the world to have, far from it, but I sort of feel as if there's a psychological impact to having this illness. I can't put my finger on it but I feel really alone. Plus I have been doing more research on the meds and am scaring myself about the possible side effects. Am a worrier at the best of times and this has given my anxiety a fuel injection! I would just like to hear from anyone who's also in this creaky, painful boat - let me know how you are doing ?

TheHobbitMum Sun 08-May-16 15:03:08

Hi, I've got RA (plus loads of other autoimmune issues from the RA) and I've lived with it for about 7yrs now (I'm 35) after a hellish 2yrs of misdiagnosis. It's a huge condition to cone to terms with so don't worry about not feeling great about it. It's a shock and takes time to come to terms with. Can I help with anything in particular?

hilbobaggins Sun 08-May-16 16:12:37

Thanks for the speedy response HobbitMum (like the name, are we related? wink). I'm sorry it took them such a long time to diagnose you. I can imagine how difficult that must have been. I went to the GP several times before getting referred and was told it could be all sorts of different things. Now I'm finally under the consultant I have a treatment plan which seems sensible but of course all sorts of doubts and questions keep coming to mind.

Thanks for saying that it is a huge condition to come to terms with, I think I needed someone to say that I have been really downplaying it to family and friends but I think I've been in denial. Now I suddenly feel sad and scared.

What meds are you taking? Do you still have flare ups? And is there anything you do / did that helped you to understand and manage it better? My next appointment (apart from bloods which will be every 2 weeks) is in a month. Right now I do feel better physically but have no idea if that's the meds or the steroid injection. I know I'm not supposed to drink but had wine yesterday, just felt in desperate need!!

fusspot66 Sun 08-May-16 16:15:06

My DAD has methotrexate injections and he feels really low the day after.

nothruroad Sun 08-May-16 16:20:31

I was diagnosed with RA at 19, am 40 now. It took a while to get on the right combination of meds but really I've been quite lucky and until the past 2 years I've almost had a normal life. I totally agree with you about the psychological impact - that and the fatigue have been very hard for me to deal with. I did a pain management class recently which helped a huge amount because it was just so reassuring to meet other people in the same position as me. Oh - and I drink a small amount on methotrexate - my rheumatologist says that the guidelines are outdated and so 5-6 drinks a week is okay.

timeforabrewnow Sun 08-May-16 16:32:22

Hi - I'm on methotrexate too - injection form, and can honestly say it has transformed how I am able to live. Also still have to take Diclofenac/folic acid and omeprazole.

I guess I've been on it around 4 years and sooo much better for my knees which are the most affected part of it for me.

It is a big deal, and quite sobering to come to terms with a diagnosis of RA, but what choice do we have? flowers

At least there are some very effective treatments around now, and any serious side effects are detected with your monthly blood test for methotrexate.

TheHobbitMum Sun 08-May-16 16:38:38

Hey fellow Hobbit! It absolutely is a huge thing but you'll get used to it in no time. I take biologics along with Leflunamide & Sulfasalazine. I couldn't tolerate Methotrexate anymore (liver didn't like it sad ) but I'm pretty stable and can do plenty now. I was almost house bound and using walking sticks but I've not been that bad for a long time now thankfully. If they have you on Methotrexate ask for the injections rather than tablets, it's far better! I can now cycle upto 50miles a day and don't really let the RA stop me, Ive never really got used to listening to my body quite as much as I should though lol Its definitely not the end of the world, it's just an adjustment smile

fusspot66 Sun 08-May-16 19:18:41

I meant to say my DSDad feels very low the day after his methotrexate injection but his RA is well managed with it and perhaps you're reacting to the actual meds a bit right now.

aliceinwanderland Sun 08-May-16 23:01:09

marking place - as currently waiting for a referral for possible RA.

hilbobaggins Tue 10-May-16 16:51:54

Hi, thanks for all your informative and positive posts. I really appreciate it, think I needed to hear some positive stories. I'm still feeling really tired but a bit less anxious about the whole thing. I had my blood test today and I'm trying not to project too far into the future - just trying to take one day at a time. I can let myself get really carried about with worrying whether the meds will work (and at the same time what the side effects might be) and that doesn't help at all. My next appointment is in a month and I'm going to make a list of all my questions to ask then.

pinocchiosnose Tue 10-May-16 17:03:11

Hi OP. I have Psoriatic Arthritis which is fairly similar. I used to take methotrexate but I couldn't tolerate it. I've just started Humira and can already see the difference in my joints. I think chronic illness is a really difficult thing to accept and I allow myself the odd wobble now and again. I used to feel very lonely at times but I realise it's difficult for people without the disease to truly understand how it feels. Something that helped me put side effects into perspective was that if you look at the side effects of any drug ( inc paracetamol) they will range from the minor to the very serious. They just have to put everything down to protect them legally. I'm also a big worrier and drove myself crazy reading things on the internet...terrible idea. Take care of yourself and best of luck.

gruffalo13 Fri 27-May-16 14:05:22

Marking place too. Going to GP to get referral to rheumatologist. Pain and swelling and pain killers every day have made me think it's auto immune. 6 months now 😞

LetsSplashMummy Fri 27-May-16 18:21:01

The methotrexate probably hasn't kicked in yet, but the steroids should hold off your swelling in the mean time - they are working together, you don't have to worry about which it is.

I've had it for 13 years and apart from periods of coming off my drugs to have babies, have a very normal life (day long kayak trips/ half marathon running normal). I was lucky that it was really severe at the start, so I was diagnosed and treated quickly and aggressively. The drug options now are wide and wonderful and you are so carefully monitored for side effects that don't worry too much.

It is hard feeling that the person you are is permanently changed, a kind of grief for who you hoped to be, that is okay. However, there are good sides - I have so much more empathy for people having a hard time and closer/ better relationships. I also don't feel I am in "the race" any more and don't compare myself unfavourably to people as we all have different things and it is just daft. I also prioritise my health and quality of life. Take your time to work through it and come to terms with it, but there is no doubt you will come out the other side - good luck.

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