I have just very recently been diagnosed with SLE. It has been a bit of lengthy process to get to this point after a few years of several doctor trips lol. I take hydroxychloroquine and they seem to be making really good improvements and my pain and joint stiffness are coming less frequent which is great news. I am 33 years old but I am just still not sure what I suffer is actually intact lupus. My symptoms range from pain in my hands in feet which has now moved to my legs knees and sometimes my arms. The pain is like a really heavy pain kind of like a lactic acid build up after some serious exercise with out the exercise if you get what I mean. Also I find if I drink alcohol (which is very rare) I can't actually walk the next day with the pain in my legs (does anyone else suffer this?)
At my last appointment they rheumy is concerned that my lupus is affecting my lungs, i have the constant mucus build up every single dayI either have to clear my throat constantly or I cough it up (sorry for being disgusting). I have inhalers to take but after a few years of doctor visits they treated me for asthma even thou my peak flow is always perfect its just the breathlessness and sometime wheeze and constant pain I have in my chest. Anyone else have lupus affect the lungs and how do you know if its that or something else?
Really sorry for all the rambling I am just so confused and just don't know what to believe any more. I have a raised ANti nuclear blood result and because I am responding well to treatment that is why consultant says lupus.
Kindest Regards Gillian x
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GillsM
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Hi Gillian, I have had lupus for 8 years now and mine attacks my lungs. I get very breathless, especially walking up a hill and my peak flow is really good, so it does sound like lupus. I am also Hydroxychloroquine which helps. They may do lung function tests which measures how well your lungs are working. The pain in hands and feet are horrible, it feels like ice is travelling up your legs. Best thing is try to keep hands and feet warm in the first place as when they get to that stage it takes ages to ease the pain away. Carole
Lupus started in my lungs, my peak flow is also excellent for my age, after two years of treating it as asthma, the joint problems in my hands and feet became extreme, just as you describe the pain with the addition of fingers on both hands looked like raw beef sausages and were so swollen and so very painful further investigations followed and the diagnosis of lupus was made. As you, the problem of breathlessness is always there. Without the two puffers twice a day I could not work, even moving from one end of the house to the other sometimes make me breathless.
I am so glad the hydroxychloroquine is working for you, it didn't help me at all and have now been prescribed Azathioprine which is working marvellously, I've not had a flare in my hands or feet for some time.
The symptoms of lupus are so variable and individual, we just have to cope with the various symptoms as they arise, but from what you describe I am sure your specialist has the right diagnosis.
The main problem with lupus is that you simply don't know each morning how you are going to wake up, sometimes going to bed feeling ok and wake up with pains you didn't have the previous night!
Keep in touch with the folks on this site, they are marvellously supportive and knowledgeable and have got me through some very difficult times.
Insofar as the occasional drink affecting your legs, this, thankfully, I don't suffer from, I can only suggest cranberry juice!!
Hi Gillian. I too have recently been diagnosed, I'm afraid I cant offer any support but am suffering from the same symptoms as you with regard to the build up of mucus, I too have inhalers and struggle with oral thrush, but my peak flow isn't so good. I understand that Lupus effects people in different ways and hope its of some comfort we are effected in the same way. I have an appointment with my consultant in a couple of weeks, I will report back if he suggests anything of significance. Please keep in contact it would be lovely if we could share our experiences. With very best wishes. xx
I was diagnosed 6months ago with A-typical lupus after years of seeing different specialists. Am on hydroxy for last 6 months and feel it is doing some good. I suffer terrible with pain in feet ankles arms knees and energy levels really poor but still an improvement from 6 months ago. Had a chest infection month ago n still go honking cough. Also go chronic fibromyalgia which gives me lot if pain so sometimes it's hard to tell which illness is affecting me. I think it's best to take each day as it comes and not to expect too much but be positive cus it helps. Good luck x
Lupus can cause inflammation anywhere and every where in the body. There are several physiological reasons for this. No matter what the reason, inflammation is managed by non steroidal anti inflammatories, prednisone, and/or immunosuppressive medications. Stress is a huge contributing factor in lupus as well.
Thank you very much everyone for all the responses it means the world! I am so grateful to find support and understanding from fellow suffers and for the first time in a long time I don't actually feel like I am going off my head! I have an appointment in a few weeks time for a lung function test so hopefully it won't be too long until I can get answers and maybe even get some new medication to deal with the lung thing! Thanks again everyone it honestly means a lot you taking the time to read and reply xx
Yes im exactly the same, its true if you dont keep your feet and hands warm it can be a nightmare, I had a night out last night 1st in ages but today im spending it in bed due to feeling wiped out and pain in my feet, legs and hips, I take same meds as you, along with other meds, I dont hope you get some relief at some point x
Gillian - my original symptoms exactly, albeit over the last 13 years the condition is slowly burning itself out. I had to stop the Hydroxy last year due to the length of time I had taken it. I now have Brochieactisis (sp) and a Physio showed me how to perform Autogenic Drainage (simple excercises to clear a blocked chest). I can highly recommend trying it, anything to keep away from steroids and antibiotics is a good thing.
I'm 60 and apart from lately have been very active, it just means that you need to manage your daily routine differently. A positive outlook makes it easier to cope with.
Hope this little story helps as this is all very confusing as the start.
I also have been recently diagnosed with lups and also suffer with chest pains when I walk any distance especially uphill.l have hsdba pulmonsry function test and a chest xray whivh have both come back clear so now got to hsve sn echocaridiogram
Hi gilsm just read your story really feel for you..can exactly relate 2 U..im 39 diagnosed lat year..i have sle only in my arms though..one thing that is helping me is drinking hot water I know its hard but it definitely helps with joint pain, try it doesn't have to be boiling luke warm start with a glass in the mornings..put a Couple of lemon drops..or honey..and later in the day keep sipping hot water..avoid cold things like ice cream..lol still cold yet...honestly please try as its working for me..take care..xxx
If you think it would help i could send you an information pack which has some very helpful information and facts on lupus. Just send me a private message with your address, or if you wish you can email me and i will pop one in the post for you. hayley@lupusuk.org.uk
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