I’ve had RA for 5 years and have only been ok on MXT but I get regular flares and lately my feet have now started to deteriorate faster then other joints.
Along side this I have had regular bouts of depression, insomnia, night sweats, brain fog/memory loss, severe fatigue, and worsening anxiety which I’ve always had an issue with to be honest but more worrying to these things I’ve had irregular bleeding for a year now.
Whenever I’ve gone to my doctor about these symptoms they say it’s my RA or it’s my medication and to try to eat healthier and get some exercise which is almost impossible with my feet.
All tests for hormone issues, early menopause, sti’s etc have come up clear including smear tests but I’ve now been referred to a Gyno to make further checks for cancerous cells.
I must also now pick a biologic to stop further joint damage but am petrified about the possible cancer risks associated with them and what’s happening to me at the moment.
I spoke to my partner about my problem and he said ‘really?’ and picked up his phone to do other things, I was so upset and told him I was worried about all of the above, which he’s known for some time, and wanted advice but it ended in an arguement and I still feel as though no one either professionally or personally is listening to me.
I feel as though I can’t take it anymore and I’m always crying, tired and in pain and I don’t know where else to turn or what else to do anymore
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iAce
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Like you, I had issues with anxiety and depression prior to my RA diagnosis. It’s spectacularly unhelpful when people won’t listen to what you have to say.
I was on MTX, but an increase dose caused me illness etc., so I’ve stopped taking it, pending a new rheumatologist. What I’ve noticed since I stopped taking MTX is how much better my mood is - I didn’t realise how ill this medication was making me feel. I’m a supporter of taking appropriate RA medication, so this is a bit of a blow.
I have a good Counsellor that I see. It sounds like some professional help would support you in dealing with some of this stuff - are you able to access psychology/counselling? Particularly if your partner is feeling a bit burnt out and not able to help?
For your feet, have you got a Podiatrist? These folk are magic at getting your feet functioning as well as possible. I’m from Australia, so able to refer myself to a Podiatrist. Seems from what I’ve read, that you need someone (GP/Rheumy??) to refer you. Please try and follow that up, as getting your feet comfier will help your mood.
Lastly, there’s always someone here to offer a sympathetic ear, so don’t give up Also, I’m sure someone with better knowledge of your NHS will come along and offer some good advise. Being in a different time-zone, I often reply first at this time of night/day - so I try to send good wishes, all the best, cheers Deb
The podiatrist made insoles for me which helped one foot but not the other as the problem areas are different on either foot but my rheumy did get me an MRI which discovered I have posterior tibial tendonitis in both feet it’s quite bad so I’ve had to have 2 steroid injections in the space of 3 weeks and that’s why I’ve now been referred for biologics.
They’ve been great medically but mentally all my gp has advised is to call a mental health helpline or consider anti depressants, RA drugs permitting.
I’m glad to be able to hear from you though and thank you it feels better talking to someone who understands x
Posterior tibial tendinitis is horrible. I had this issue with my left foot (the worst), since getting my soft orthotics it’s much improved, and I’m “saving” my right foot, which was heading down the same path.
As I’m in Australia, I’m not much help on resources for mental health. What I will say is that for my referral to my new Rheumy, I’ve requested that ALL of the notes relevant to my mental health status be removed. Much as I’d like to believe that medicos can be trusted to be “non-judgemental”, this was not the case with my previous Rheumy. Something you may want to consider for the future. All the best, cheers Deb
Welcome iAce, you will find lots of support here and also on the NRAS website.
As far as biologics are concerned the risk of cancer is small, whereas your situation with RD is really causing you problems and affecting your life now. So you need to balance everything off and not worry to much about the drugs, not taking medication will affect your joints even more. A medication that works for you could transform your life for the better.
Do come on here and let off steam if you need too, there is always someone who will listen, really listen to you.
Thank you Mmrr I’ve started to write a post about this issue at other times in the past but I always feel embarrassed but just writing it and pressing send helped and the advice and kind responses definitely help as outsiders just can’t understand so thank you x
Hi I Ace, really sorry it’s getting to you, think we’ve all been there. Like yannibacci I found a real improvement in depression, anxiety insomnia when I came off MTX but we’re all different. Sorry your GP hasn’t been more helpful with these issues.
Here you can self refer for long term condition cbt classes (not a cure obvs but I found a lot of it helpful and other patients sympathetic cos you’re all in same boat) ‘talking changes’ it was called. Just a thought: you might think it’s a load of rubbish or might be worth a try 👍😊 x
PS I know all the drugs are scary but I found biologics to have far less side effects fwiw
Hi Kerensa21, I think I might try the cbt as something’s got to give so thank you I will look it up in my area and by what you and others have said the biologics change could help more than just my pain but also my mood if MTX is a cause, thank you for taking time out I really appreciate it x
No probs iAce, it’s a horrible thing to come to terms with, I’m not there yet. I really hope you see some improvements soon. Always a weigh up between drugs and side effects x
Hi, so sorry that things aren’t great for you. I was exactly the same on methotrexate, it made me so depressed and anxious. I’ve gone thru all the dmards, am now on lefluonomide. If this goes the same way I’m stumped.
My rheumatologist is not very sympathetic re anxiety etc, which doesn’t help, it’s a rotten situation to be in. Coming on here always helps as we are all in the same boat and totally understand.
Sjhoney I was oblivious to my meds having even a possible chance of affecting my mood in this way although I know my pain and total lifestyle change alsonplays a part I’m on the max dose of MTX at the moment and this is the lowest I’ve felt so there could well be a link there changing meds may help somewhat and also managing my pain better will definitely improve things but the isolation I often feel will take more working on but I do feel more positive since yesterday and speaking to you all, thank you x
Try biologics. I’ve been on them for almost 20 years and I’ve been able to do much more on them. Not perfect but so much better than suffering. You may have to try different ones but it’s worth it.
So sorry to hear you are feeling this way. Health professionals are supposed to be more aware of the effect RA can have on wellbeing and mental health but it seems some are better than others at understanding. It is definitely worth asking for help from other sources if your GP is unhelpful. I seem to recall "mind" website having a good list of resources and knowing who to turn to. There is also the shout text service in the UK (text shout to 85258) or see more on the "give us a shout" website. When I had a bout of depression in the past, I felt it would last forever, but now I look back and it was just a period of my life but at the time I felt I couldn't see the end of it. So just trust that things WILL get better and I really hope you manage to access the right support for you. In the meantime, remember there are fab folk on here that will be a listening ear. Wishing you the best xxx
I really feel for you as you must feel like you are going round in circles you poor thing. I have found that RA and all the other associated conditions can make me feel isolated and frustrated. All I can offer you is that although it doesn't feel it, you are not alone. There are thousands of us cheering you and each other on. I try not to make my comments too negative but it does sound as if your hubby does not really understand your condition, so maybe he could come with you to your next consultant appointment. In the meantime I wish you well my friend.
You didn’t mention if you were on a anti depressant or anti anxiety pill or if you were seeing a therapist ..you are dealing with a lot the medication may help settle down your mind a bit
I totally know the frustration, anxiety etc. I’m just dipping into this but I was prescribed: Amitriptyline, is a medicine primarily used to treat a number of mental illnesses. These include major depressive disorder and anxiety disorders. But it really works for some people with pain.
It's especially good for nerve pain such as back pain and neuralgia. I hated it at first felt kinda dopey but I stayed with it as it takes a while to ‘bed in’. I sleep better and it’s working well for me. Just a thought anyway and good luck. I’m very grateful for this site as otherwise I think we’d all feel trapped otherwise as none sufferers cannot walk a mile in our shoes!
We are listening. Channel whatever inner strength you have to find a support group and to continue to advocate for yourself. Biologics have been the saving grace for so many of us. Risks are small but there. Risks of unchecked inflammatory process include heart, lung, eye disease and permanent disability. Don’t forget driving is risky. If you need second opinion or more supportive doc, find another one. Your fears are not abnormal. Just don’t let them beat you. Fight on to live another day.
So sorry you are going through this, I know how hard it can be when you are in pain,fatigued to the point of you can't even think and frustrated that know one understands how you are feeling. I have been in the same situation, it's horrible place to be. When I feel this way I read scripture or listen to praise music or read in my devotionals. It always makes me feel a bit better. Sometimes I think our spouses or family members don't know what to say to us, I believe they wish we weren't in pain and that they care about us, but they just don't know how to react to us. I pray that you find some answers and get the help you need to ease the pain you are in physically and emotionally. These diseases are horrible to go through, but please know all of us here have some inkelin what you are going through. Also, don't be afraid of the biologics most of them have a low percentage of causing cancer. I have been on alot of them for several years and personally know others who have been on them much longer. I haven't had any side effects except fatigue which I already have and it is usually worst the day of infusion or a couple of days following. I waited a full year before I started biologics because of fear and I prayed throughout the year for God's guidance to decide if I should. Please know I am thinking of you and praying for you. Hang in there and don't lose hope.
Big hugs huney, this group us always supportive, I don’t post much but in the beginning when I was worried I had my mind put to rest with support from this group, we are all in it together unfortunately... us and the dreadful RA or RD whatever you want to call it!
Just let off steam and ask for advice whenever, someone will always be there 😘🥰🌞🌸xx
Sending a hug - going through similar issues at the moment , but luckily for me I’m not in so much of the pain you are experiencing. I was on and am hoping to go back into Cimzia shortly - it was really helping me - took me off due to a heat rash - still have it. Was warned about the cancer element but figured 1 in 2 people get cancer these days - I got the lucky 1 in 200 for the RA so figure it’ll probably be me who gets cancer anyway. So - my thought is that if I get it I get it and deal with it when I know, but if in the meantime I feel so much better then on biologics then I m going for that comfort !
Hi I feel for you , I have been in terrible pain the last couple of months,I bent down to get something off floor and got this terrible pain in back I continued working, eventually saw gp redo for X-ray finally got results after 6 days and have three fractures in my back, I even rang 111 and we went to hospital the week before results and was told it was muscular, It felt like labour, in agony, does anyone listen to how we feel, I’m now waiting for a bone density test which I have constantly waited for go to sign letter. I have always been positive, and now feel I have lost interest in everything, and bye the way I have been on steroids for a year and do feel this has weakened my bones . Keep strong
Like YanniBaccI, I had problems with anxiety and depression before my diagnosis of RA. Most interestingly, anxiety and depression came on without any particular reason (such as bereavement or redundancy) about 4 years ago. I was then prescribed antidepressants which did not seem to work as they had done previously and which I then found I was allergic to, which I hadn't been previously. After complaining of all-over-aching and tiredness to my GP, I was sent for blood tests, one of which showed a high rheumatoid factor. After 2 more years of anxiety and depression, I then developed the physical symptoms of RA and saw a rheumatologist who prescribed me sulfasalazine. After 12 weeks of taking sulfasalazine, the RA went into remission and so did the anxiety and depression.
I have recently had a slow return of the RA symptoms - inflammation of joints, pain etc, with some return of the anxiety and depression, and the dose of the sulfasalazine has been increased. I am still hoping for improvement, though only one week has passed since the increase in dose.
Edward Bullmore, a physician and academic in the field of RA, has written an interesting book on the connection between RA and depression, 'The Inflamed Mind' (2018), which I found very interesting and helpful in providing a possible understanding of the link between RA and depression.
If only this new insight might lead to better treatment...
My diagnosis is only 7 months old and previous to that I took no medication, not even supplements. By now you have probably seen that there are already 2 things that make you and I to differ (could be I mean). If I add in that I am 72 and was a very strong healthy woman who could cut firewood with my chainsaw, split it with an ax, plant an 1,100 sq. ft. garden, and cook everything from scratch, raise meat chickens, pigs, turkeys and so on there are a thousand reasons why I could be depressed since I can barely open a water bottle now.
Everyone here has a different story and it is OKAY for you to take time to come to terms with just the diagnosis, which is a life sentence. Why wouldn't you be depressed and full of regrets? My hope for you is that someone will come alongside and help you put one foot in front of the other until you can reconcile your disease with your ongoing life.
For me, knowing about RA and another one waiting on deck, is control and power. I got that here on this site from these excellent folks who have so much experience.
Do not give up, mourning the loss of your previous health is a good thing. That part will end. Those who do not have RD have very little knowledge of it and some have none.
Get your medication worked out - it takes so much time. I am on lots, mostly methotrexate which hasn't caused my journey in and out of sadness. The disease did that.
The drugs I am on are working for the pain, which was unbelievable, and giving me back some of my life, for which I am thankful.
Educate your people if you are up to it. There's plenty of material on this forum to print and hand out. Otherwise. be your best supporter, learn how to say no, I can't do that and to say, will you do that for me, I can't.
God bless you well on this journey which may never end. Some of the perks will show up. This forum is a blessing for me.
Hi there, so sorry to read that you are feeling so low and ignored .
I didn't want to read and run and as you have had some excellent advice I don't have much more to add except to say that Mtx made me feel low and yucky and that was just medication , let alone any other health comcerns .
I do hope that you will find relief soon and find a supportive friendship as well. Please keep posting on here as we are here to support one another and we do understand .
Take care ,
Balletmum71 xx
Hi Ace
I am just starting my RA journey and I get so many of the things you say.
All I can do is send a virtual hug, we are all here for the RA reason but allneed a hug sometimes.
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