Hello, I’m new here. I’ve joined as I feel I’m not coping well with lupus and my symptoms. Also I don’t feel my doctors are really doing much for me or understanding how much this stuff can get you down.
I’m suffering bad with joint pains at the moment. In my arms and ankles. I’m not sure if there is anything I can do or take that could ease this ?
Also I’m curious to know does anytime deal with weight issues. As being diagnosed I struggle to lose anything and I’m gaining and gaining I can’t get a balance. If anyone has advise I’d be grateful.
It’s just hard as the weight thing gets me down then also dealing with pain and the rest like fatigue and just not being my self. I feel I’m stuck in a cycle I can’t get out of.
Hope someone can help.
Thank you so much
Ashleigh x
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Ashleigh12992
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Sorry to hear you've found yourself having to join us - but glad you're here The low mood stuff is a bugger, but there are some techniques and approaches that you can try (a lot of it is trying carious self-help stuff and seeing what works for you, but there is also more 'professional' support like CBT).
From the physical point of view, what treatments are you currently on - and how long have you been taking them? Maybe some adjustment is needed? X
All I am on currently medication wise is hydroxychloroquine. But I don’t feel it’s doing much. Also I’ve been told to take folic acid as well. But other than that I tend to try taking pain killers when I’m aching.
Thank you so much for responding it nice to know other people are dealing with it I’m not
The only one. Sometimes the doctors don’t seem to take much notice or I feel they don’t listen. Again thank you. X
A lot of us find that unless we are in an acute flare or crisis, we are left pretty much to get on with it alone I'm afraid. This forum has helped me no end with that - like you say, it is so comforting to know you're not alone.
Practical stuff: if you're in the UK, you might be able to self-refer to physiotherapy, or at least ring for physio advice without needing a medical referral. In my local NHS hospital, there is also a hydrotherapy pool which is open to all at certain times. I find it really helps with joint pain, flexibility and general soothing. You might also get help with exercise and weight issues from physio?
As you know, a lot of people also take steroids to control inflammatory pain and it is very effective. I would be VERY cautious about going down that road though; as you know, steroids can have lots of side effects - including weight gain! Would you consider trying midfulness or meditation classes or 1:1 work? I've found that can help sometimes. x
Welcome and really sorry to hear things are such a struggle right now. You are in good company. We all have various forms of connective tissue diseases, which are mostly treated similarly, so we understand the medications, side-effects, let alone the symptoms themselves; and just how depressing they can be much of the time.
Just wanting you to know you're not alone in all of this.
I have suffered Lupus for the last say 2 years and I feel your pain, One thing I can suggest (which happened to me weight wise) is get your thyroid checked, specifically a full thyroid panel / Most importantly TSH, FREE T3/T4 - TG / TPO Antibodies and last but not least Reverse T3.
I couldn't lose weight because of my thyroid issues and another thing is the steroids we have to take for most part. I hope this helps some!
Thank you so much. I think I had a thyroid test years ago and it came back fine. But worth trying what you have mentioned. As I’m not sure if it were a full one.
Hello Ashleigh, welcome, you’ve come to the right place as we’re all in the same boat here - there’s always someone who can help and advise and most importantly truly understand.
So sorry you’re in so much pain at the moment. I find when the fatigue and pain is at its worst that’s when the weight gain is worst because I feel I need to snack (often sugary or salty things - or both 😬) to give me a little energy.
When did you start hydroxychloroquine? It can take 3-6 months to fully work so that might make a big difference soon. There are lots of pain relief options, you shouldn’t be left in bad pain. Do you have a good rheumatologist or rheumatologist nurse to contact? They often give steroid injections which can be quite magic for many of us with pain and fatigue.
It’s awful feeling like your life has changed but so many people with lupus, once the medications get sorted, can have very normal lives. I have a very relapsing/ remitting form like lots of people and when It’s bad, it’s easy to forget that good phases will follow and between flares I am almost like a ‘normal’ person!
You will feel better than you do now. Be kind to yourself (that took me AGES to learn!), don’t feel guilty or like a day - or more - in bed is wasting time, it’s what we need sometimes to fight this.
And pester your Drs for help! There are loads of treatments to try, it’s just finding the ones that suit you.
I am sorry to hear that you feel let down by your doctor, have you thought about asking for a referral to see a different doctor? If you would like to learn how to change doctors/consultants, read our blog article at lupusuk.org.uk/getting-the-...
Around 90% to 95% of people with lupus will experience some sort of muscle/joint aches and pains. We published an article on our blog about pain management which contains helpful tips and information: lupusuk.org.uk/pain-managem...
According to The Lupus Encyclopedia, many people with lupus experience fluctuation with their weight; this can be due to several different factors like metabolic disorders, decreased activity due to pain/fatigue and side effects of other treatments such as antidepressants.
We published a blog article on lupus and exercise which includes a lupus-friendly workout video which you can do at home or in the gym. The article also included information on a variety of different exercises a person with lupus can do, without putting strain on joints/muscles. You can read the article at lupusuk.org.uk/lupus-and-ex...
Although exercise is important, it is crucial that you do not over exhaust yourself as it takes time for the body to ease itself into a new routine of exercise. It is advised to consult your GP or physiotherapist before undertaking new exercise regimes to ensure you can gain the most out of them.
We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...
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