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:worried:Hello all,

I have been diagnosed with mild lupus for seven years, and still this annoying disease has the ability to surprise me - just as I think I can cope with one thing...a new manifestation appears! I was just wondering whether anyone else has a similar spectrum of symptoms to mine...and what you are doing about them!...

I get joint pain constantly in many different places, inluding fingers, wrists, elbows, knees, hips and toes...most often the joint goes red, gives off heat and swells up, though my knees have a tendancy to just explode in sharp pain if I attempt to do anything crazy like walk up stairs.

I get what I think is like tendonitis...if I use a mouse or type to much or hold something for too long, the backs of my hands swell up and I can't move my fingers because of the intense pain...the swelling then takes around two days to fade away.

I also get swelling around any part of my body that I put stress on - my back when I sit against something hard, my lips swell if I bite on them or apply too much pressure, my arms if I lean on my desk too long...again the swelling takes a couple of days to fade.

I get what seems like joint pain in my ribs, which makes it painful to yawn...so much it brings tears to my eyes when I do, though I have taken to gritting my teeth to stop myself.

The 'sleepies', otherwise known as fatigue, that creeps up on me and steals all my energy so that my logical cognitive functions just stop and all I can do is curl up in a ball on the floor and go to sleep.

Other things on occasion - severe migraines, mouth ulcers, IBS, depression, cognitive dozyness, muscle pain, and a very good forgettery.

Tell me I'm not alone, and that the whole thing is just complicated!

Bests,

RM
 

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Hi Roseann,

YOUR NOT ALONE AT ALL. I will tell you that although it is frustrating to think things calm down and then BAM.......it is back with a vengeance, it is good to know you can come here and chat with folks who understand what your feeling.

I am sorry your dealing with so much. In the past I have had pain so severe crop up that you would think I had broken my foot. I literally could not walk on it at all. My husband will say, "But you were fine one hour ago"! Yup, welcome to my world. No rhyme or reason to this disease and how symptoms can wax and wane.

I get swelling in random parts of my body that comes and goes. I have posted about this here and a lot of other folks get it too. How does one go to bed fine and wake up in the morning with a leg or hands twice the size as the night before???? This is one crazy disease.

I just wanted to reach out to you and let you know that I get a lot of the same things you get. Your not nuts, just sick to death of dealing with this thing called Lupus.

I do hope things calm down for you. Are you on prednisone for swelling? If not, maybe you need to mention this to your doctor.

Nice to meet you and sure hope to get to know you better. Come join us in the chat room sometime.:wink2::wink2::wink2:
 

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Ooh, I forgot that bit...

I am on 400mg Plaquenil, two diclofeacs and a cocodemol in the evening, amitryptlene to help me sleep, cod liver oil and ginko/ginseng supplements to help me stay awake, and B vitamins to help me absorb nutrients because I don't eat a lot.

I get that whole broken feet/shettered knees thing and can't walk, and often get stranded places becuse I can't walk or move much...thank goodness for cabs! I am just not sure how bad it is supposed to get before I ask for prednisone...my consultant only sees me once a year at the moment, and my GP doesn't know much about it, so it does get complicated.
 

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Hi Roseanne and :hugbetter:

As Karol explained this sort of thing is very common and much of it is the nature of lupus :mad::sad:

I presume your doc has tested you for Rheumatoid Arthritis (just thinking about the swelling and redness)? We can get that with Lupus but it's not all that common unless the disease is poorly controlled. Have you been on Plaquenil for a fair amount of time? Are you taking care with sun exposure etc.? If the answers to both those questions are yes then I think it is a good idea to raise these issues with your Rheumy. It's not ideal only seeing them once a year, they really get a poor idea of how we are coping in between visits as there is only so much time to go through all the things that are happening to us.

I also get swelling around any part of my body that I put stress on - my back when I sit against something hard, my lips swell if I bite on them or apply too much pressure, my arms if I lean on my desk too long...again the swelling takes a couple of days to fade.
I'm far from an expert on this subject but do you have urticaria? These sorts of symptoms often occur with it an aren't usually part of a normal Lupus scenario. Another thing to bring up with your doc who should realise there may be something additional going on.

I hope it's possible to schedule an extra appt to go over these things with him. After all it's you living with this for 12 months before you get a chance to explain to him. In the meantime it's you that is suffering and there's a possibility that adding another med to your regime (provided Plaq has had time to kick in) would benefit you greatly. I wouldn't necessarily be looking at something like Pred either, yes it will damp down the inflammation but the root cause will still be there and there are alternatives, even a low dose of an Immunosuppressant may be enough to eliminate some of these ongoing problems for you.

Take care,

love
Lily
 

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Gosh Roseanne, it's funny that you should ask that question because today I feel so cross and frustrated and weak and pathetic because I've been floored by yet another symptom. When I'm in positive mode I can get by knowing in the big scheme of things it's just another sore joint (or nose sores, or migraine etc) that currently hurts like **** , but hey, tomorrow it might not hurt at all.
Last week's symptom was different to today's, it came, I left work early, I took pills and rested and the next day I was fine. Today I hurt so much more than last week (but of course in a different place) and I'm thinking to myself "why on earth did I woose out and go home last week when today I feel that I really need to be at home"?
I don't normally vent, but this not-so-lucky-dip is so darn maddening!
Freya
 
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