27, feeling alone and like no-one understands...
Hi,
First time to this forum... Looking for some support. Recently my RA has gotten a lot worse in my hands, mainly my dominant right one. I was diagnosed in 2016, but during what has felt like the longest year of my life I still have no set plan in place for treatment due to a very poor reaction to MTX (seizure). Currently i'm on painkillers alone; Paracetamol, Naproxen and a whopping 120mg of Oxycodone a day! Although this takes the edge off the pain, it still causes loads of difficulty doing the simplest tasks. Recently i've started noticing a significant loss of flexibility and strength in my hand. In all honesty this terrifies me... I keep thinking to myself "i'm 27... how could this be happening already? If it's this bad now, what will it be like in ten years time?"
I feel like to most people I sound as if i'm moaning about nothing... Like they think "it's only sore joints, how bad could it be?" Over the past couple of months i've noticed the psychological toll this disease is having. Where I used to be confident and full of energy I now feel physically and mentally weak.
I was due to have an appointment with my Rheumatologist last month, but it was cancelled by them and i've yet to have a new appointment arranged. I have seen my GP but they were unhelpful and couldn't do anything but increase my pain medication. Would anyone here recommend going to see a private consultant for advice? I realize this would be fairly costly, but if it was worth my while I would very seriously consider it.
Any advice you guys could give me would be amazing.
Thank you in advance!
Aimee
Hi Aimee90. I'm sorry you are having such difficulty. That reaction to MTX must have been scary. I don't know if you are in the U.S., but if you are, please call your Rheumy twice a day until they put you on the schedule. I don't know how it works elsewhere. MTX is one of the main drugs they use for RA, but certainly not the only thing in the arsenal. If they don't give you something like a DMARD (google it) or a biologic, find another Rheumatologist. Opiods are not a long term solition. You are right to be concerned about your future in 10 years with your current treatment plan. Your Rheumatologist can try something like Xeljanz which can be a stand alone RA med. Most likely they will also put you on Plaquenil, but I would be disappointed if Plaquenil was the only med he put you on.
Be persistent. You are your best advocate.
KT
I'm in the UK, didn't realize this was a U.S forum! Thank you for your advice though, appreciate it... You're right about needing to contact my Rheumy more often. When I get a bad flare up it puts me in a poor state of mind, so find it hard to be assertive. Silly I know... Definitely don't want to have to rely on Oxy for the rest of my life. They're not a viable solution, DMARDS would at least treat the underlying issues rather than just masking the pain.
It's such a terrifying experience feeling like my hands are starting to give up on me, I really don't want it affecting my work. Even getting to the stage now where I struggle putting a bra on, so embarassing...
It's good knowing there are others going through the same thing (don't mean i'm glad other people have RA lol, just comforting knowing there are others to speak to about it!).
Thanks again for your response 😀
Hi Aimee90. I don't think this is just a US forum. I happen to be in the US, so I knew the rules were different for the UK and something you said made me think UK. I am told by other people that you don't have all the meds available to you that we have, and I think you may have one we don't yet. All I can tell you is to be persistent because it is easy to get left behind in the NHS. You have less choices, but you can still ask questions and ask for more aggressive treatment. You can always go on this forum and get feedback from us. We learn stuff from overseas too. I think France has a new drug that I'm eagerly awaiting some personal experiences to be posted.
I know it is hard to be proactive when you are in pain and taking a mountain of narcotics, but it is your best way out of this hole. I would make the call for you if I could. They would probably be so tired of hearing from the American they would put you first in line.
Take care.
KT
Really appreciate the advice 😀 don't get me wrong, i'm very very grateful for the NHS but it is frustrating feeling like i'm at a dead end! Naively when I was diagnosed I didn't anticipate it would be such a long process from diagnosis to treatment. Scares me to know that because of the amount of opiate i'm taking my body is becoming more and more tolerant, which leads to me needing to take higher doses. I'm not the only one obviously and i'm certain there are people suffering who have it worse than I do, but I hate having to take such potent medication at a (relatively!) young age
Aimee
HI Aimee90! I did want to chime in and say that though this site is based in the U.S., we have an international membership, if that makes sense. Since we are in the U.S., our understanding of the NHS may be limited. But, you are welcome to post here anytime! And, sadly, I can say that many of our members can relate to your experiences. The road to diagnosis can be long and frustrating. I am so sorry your appointment was cancelled and has yet to be re-scheduled. And you are definitely not just "moaning" about just "aches and pains". RA pain is REAL (as you well know!)
I don't know if you can be referred for physical therapy (PT) in the U.K., but many of our members have found it to be helpful. If you don't feel comfortable being assertive with your physician, you can start taking notes about your symptoms and their progression and share that information with your physician. And as hard as it is to speak up for yourself, especially when you are feeling crummy, just remind yourself that YOU are the best advocate for your body and your health. It's hard, but necessary. Here is some information on hand pain and weakness that you might find useful, in light of your recent concerns -- https://rheumatoidarthritis.net/symptoms/hand-pain-swelling-and-inflammation/.
And many of our members can relate to the fear of opioid use. This is a very serious issue and one that should be treated as such. You should let your doctor know about your concerns (your specialist; obviously not the GP who would prescribe more). Again, so much of my advice is based off you actually getting in to see said doctor. I hope that happens very soon!
And, as far as the bra issue, well, it's actually not an uncommon complaint here. Getting those things on and off is hard enough when you *don't* have RA! One of our contributors wrote about the bra conundrum here -- https://rheumatoidarthritis.net/living/literally-sweating-small-stuff/.
I wish I had more clear cut answers for you, Aimee90. And I do hope you can get that appointment asap. Please know we're thinking of you and please keep us updated on your situation, if you feel comfortable doing so. Best, Erin, RheumatoidArthritis.net Team Member.
