I'm new to this site: Had to find a forum to ask... - LUPUS UK

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I'm new to this site

Calmityjayne profile image
7 Replies

Had to find a forum to ask people who have the same condition , but at the moment I am having unbearable pains n my feet , is this normal it's normally my hips and wrists but the foot pain is agony

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Calmityjayne profile image
Calmityjayne
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7 Replies
JacquieCD profile image
JacquieCD

I have problems with pains in my feet at the moment too. Especially the tendons around my ankle when I try to walk..This is new as it was my knees that hurt, then my shoulders, now my ankles/feet...this makes even walking with crutches very hard. My hands have hurt for a long time so I have special crutches, which uses the forearm, but my shoulder pain cannot be gotten around...I have been told this is all caused by a flare up of both Lupus and Fibromyalgia. So you are not alone

Slowmo profile image
Slowmo

I too have experienced pain in my ankle, which is not 'the norm' for me either, I usually suffer with hips and shoulders being the most painful - aside from small joints in fingers/toes etc. But again the pain resembles tendonitis and appears suddenly and sharply and reasons unknown to me disappears as suddenly for reasons which are beyond me, lol.

I have not been able to identify either triggers or anything to alleviate it, it seems to come and go with no rhyme or reason. Hope you feel better soon and your symptoms even out a little,

Slowmo

madmagz profile image
madmagz

Hi

I hope you find this site as useful as I have, quite honestly it has been my saving grace sometimes when I have felt like I am going round the bend as my fellow lupies DO know exactly how I feel when they say I know what you mean! So hello and welcome.

I used to suffer with chronic pain in my feet and ankles with the added problem of being allergic to most pain killers, you have not said if you are taking any medication for lupus or not or if you have been diagnosed with anything like rheumatoid arthritis, I was prescribed methotrexate once I started getting pain in my feet and ankles which was causing problems with my walking, I do have to take folic acid to help my liver cope with this but that is due to another problem but it may be worth you discussing it with your doctors as it made a huge difference and the relief I felt was great, I would strongly recommend it. I do have to have weekly blood tests mainly due to my liver but others on this medication don't need them quite this frequently but do have to be checked regularly, my other lupus symptoms have been better too, it may well be worth a try.

Good luck

Madmagz x

Calmityjayne profile image
Calmityjayne in reply tomadmagz

Hi I am taking plaqanil and thyroxine and have b12 injections no pain killers seem to work at mo any ideas of good pain killers that won't wipe me out as need my mind for work lol

madmagz profile image
madmagz in reply toCalmityjayne

Hi Calmityjayne

I currently use Oramorph, it does not wipe my brain out like morphine patches or injections but is quite effective. I would rather not take an opiate based pain killer but due to allergies have no choice so maybe it might be worth asking your doctor it you can try some, he or she may need some sweet talking to let you have your own strong opiate based pain relief but it depends how good your relationship is with them. Mine was very god and is so empathic that I had no problems getting it but they do keep a close eye on how much I have and in what time scale. I have never tried the meds you are on due to my allergies but am on methotrexate, oral steroids and steroid injections in my joints if I need them.

Good luck I hope you find something that gives you some relief from your pain soon

Madmagz x

wotshernameagain profile image
wotshernameagain in reply tomadmagz

Hey madmagz

How are you finding the methotrexate?

I am due to start taking it in September following the results of my chest xray and im just praying that the side effects aren’t as bad as my original symptoms

madmagz profile image
madmagz in reply towotshernameagain

Hi Wotshernameagain, I have found the methotrexate to be a Godsend, my symptoms are so much better. I was a little worried about taking it to start with after reading various stories of people having all sorts of chronic illnesses when they took it but quite honestly the doctors have been wonderful and kept a close eye on me, I go for my regular blood tests which have also improved and feel fine. They told me about the many people who were doing well on it and how there are so many good reasons to take it so I thought nothing ventured nothing gained. They did however suggest the folic acid as I have got a problem with my liver already and they said it might struggle to cope with the methotrexate and it would help reduce any unwanted side effects too, which it has. At first I did have a few more mouth ulcers than usual and some sores around my lips but the folic acid was increased and they disappeared very quickly. Since taking these two together I have not needed as many steroid injections in my joints and walking has been easier, I have not noticed any chest problems but have a direct number to the lupus clinic to contact them in case I do.

I personally would say that if your chest x-ray results are good I would certainly give it a go, my steroid dose has reduced since I have been on it and I have not needed any infusions of I.V. steroids either which I used to go to clinic for too.

Good luck I hope it works as well for you if you take it as it has done for me, fingers crossed and I look forward to positive updates

Madmagz x

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