Help needed: RA, Lupus and food allergies?

Minnierose

Hi all,

I haven’t visited Arthritis Care for a very long time, but things are pretty bad with me at the moment and I feel in need of some moral support and advice. To cut a very long (and I’m sure very familiar story) story short, I was diagnosed with juvenile onset polyarticular rheumatoid arthritis at the age of 14. I am now 28. I’ve been fairly well controlled for a while but things have gone really downhill in the last few weeks.

I’m not sleeping properly because I’m in so much pain. I can’t lie on my side or my stomach which are my natural sleeping positions. I have to lie on my back with my knees supported by cushions so that my back is completely flat to the bed and this is a completely unnatural position for me. This is not helping my chronic fatigue. I am becoming increasingly depressed and I’m having real trouble shaking myself out of it this time. I am more affected in down my left side than my right. I rely on a crutch to walk because of serious problems with my left hip. My left shoulder has rapidly degenerated in the last few weeks and I can’t use it anymore, which has severely limited my mobility.

My shoulder is so painful that I can’t have bra straps or any kind of tight clothes touching it. So now I look rubbish as well as feeling like it. I have been pretty bed bound for the last week.

In the last month or so I’ve developed quite a few food allergies out of nowhere. Definitely egg, possibly tomato and wheat but we’re still trying to work out what. These are causing severe itching, flare ups and irritable bowel syndrome like symptoms. I have a constant rash across my face and incredibly dry eyes and I have developed eczema almost overnight.

I saw my Rheumy last week and she was really quite concerned about these developments. She said that this might be indicative of a new stage in the disease. Whatever that’s supposed to mean. She wasn’t very forthcoming but I am being tested for systemic lupus and a number of allergies that can be tested for.

I was also given an intra-articular steroid injection into my shoulder. This has caused a great deal of swelling and some bruising and even now that’s gone down the joint is very irritated and hot to the touch. It may be slightly worse rather than better. I have never reacted this badly to steroid injections before, they usually work very well.

I am currently on Plaquenil ( I used to be on methotrexate as well, but it made me so ill that I refused to take it anymore) Co-dydramol and large doses of slow release brufin for the pain. This takes the edge of somewhat but isn’t as effective as it used to be in controlling the pain.
So the upshot of this very long, self indulgent whinge is that I don’t understand what is going on with my body, I’m struggling to deal with it and I’m finding the whole thing very frightening. I would appreciate any tips for pain relief and getting some sleep. I think I would feel a lot better if I could get that sorted. I would also like to hear from anyone who has developed Lupus after having first been diagnosed with RA? Or food allergies connected to RA? I wonder how common this is or if anyone has any advice for me?

These are obviously all autoimmune conditions and are probably interrelated. My body seems intent on eating itself in new and interesting ways and so I need to come up with new ways of fighting them. Any help you can give me would be greatly appreciated!

Min x

tillytop

Hello Min

Just logged and and seen your post but am just on the way out so can't do a proper reply now. But hopefully by bumping up your thread, more people will see it and you will get some replies soon.

Sorry you are struggling so much - and I will reply properly later on.

Thinking of you.

Tillyxxx

valval

i am so sorry to read this i can offer no help at all but some one will be along soon i am sure it always a little quiet at weekends good luck and big gentle ((())) val

salamander

Hi there, sorry to hear you are feeling so awful. One of things I was prescribed to help me sleep and to control the pain was a very low dose of amitriptyline. It helped a lot though don't take it any longer.

It is the worst thing not being able to sleep. When I was at my worst I couldn't sleep for more than 10mins as every time I moved I woke up because the pain was so bad. You really have my sympathy.

dreamdaisy

I began with food intolerances, the main culprits in childhood were fruit, dairy and egg. I am not troubled by that now but that's only due to the immuno-suppressant meds I take. Asthma then joined in when I was seven and again it's no trouble thanks to the meds. I have no doubt that there is a connection between all these things but everyone is different in how things manifest. I hope you can find some answers to it all soon because that may well help you to begin feeling generally 'better' in yourself. I think things are easier to manage when we know what is happening and why, but discovering that can take a deal of time. I wish you well. DD

Minnierose

Thank you for the hug Vaval. Salmander, yes I've been on amitriptyline before. It does work really well, but I always found that it was like waking up in treacle. And I had foggy brain the whole day. I'm a lecturer and I can't teach or write if I'm half stoned. But I think you're right and it would be an option short term. I think that a visit to the GP is in order. (That will be fun )

Thank you both,

Min x

dreamdaisy

Those on amitryp take it quite early in the evening - they find they get a better night's sleep but avoid the fogginess the next morning. I understand about the teaching thing - I'm a private tutor and yes, it can be hard to concentrate at times! DD

salamander

Minnierose wrote:

Thank you for the hug Vaval. Salmander, yes I've been on amitriptyline before. It does work really well, but I always found that it was like waking up in treacle. And I had foggy brain the whole day. I'm a lecturer and I can't teach or write if I'm half stoned. But I think you're right and it would be an option short term. I think that a visit to the GP is in order. (That will be fun )

Thank you both,

Min x

I think the foggy thing wears off after a few weeks as I was able to drive the following day after taking 20mg at night. Admit was tired at first but then on a lot of pain killers as well. They take a while to build up to work effectively, I believe, so maybe tolerance increases as they begin to work. Don't know. Best of luck.