Hello there, please can anybody help me with what is really worrying me?
firstly i have had only been semi diagnosed with lupus about 6 days ago, but my body symptons seem to be changing fast, and await appt a st thomas lupus centre, but i am really worried, i don't know if i am going mad,,,,, firstly i normally have skin rash, swellings hands fingers, feet and sharp pains through fingers, and weakness, fatigue,,,, but for a couple of days now the fatigue has got dramatically worse, but what i do not understand is the pains in my lower half of my legs, the pain is weird even though it is painfull it is strange, if i press my legs it does not hurt, but when i walk it is there, it seems to be in my bones, yet no reumatoid arthritis, when i lay in bed i get a pulse in the lower part of the big bone of your leg, which sends a pain shooting upto knee cap, then in goes, and then starts again,,, but i awoke today with a unusual pain the the top part of my right leg, when you press it there is no pain but when you move it is there, this time in the muscle i would describe it as if you had a big bruise on the top of you leg, but there is not? any form of bruise and i have not banged my leg or anything just simply went to bed and woke up like it, painkillers do nothing, so now i have two strange and new things happening ie, lower left leg, bone pulse pain, and top right leg muscle? no matter what you do it is there, but what i cannot understand is that when pressed neither of them hurt, am i going mad??/// cos i sure feel like it????? i am frightened now to go asleep incase somethig else happens, my feet burn but when you touch them they do not feel hot the burning is inside, can this be??????// can anybody help, or has anybody had this, i am really frightened as i do not understand much about lupus, i have read somethings about it but it is all a bit much to take in at once, and to be honest some of it what you read is scary, so please, please, can someone help me with this, thanks,,,,
Hi. I've had screaming pain along my shin bones since age 13, episodes, that is, not all the time. And I'm now almost 54... I was Dx'ed 6 years ago. My rheumie said, very gently but with some amusement in his voice, "Well, THAT'S pretty much why it's called a 'connective tissue' disease."
Is that what you are describing, pain along the shins that hurts even more when you stand & walk?
I'm on Plaquenil & also take over-the-counter ibuprofen, as needed. While my shin pain has improved, I sense it will never go away. Also, it's worse during flares & also in damp weather. Best wishes, from Vee
Hi veej, thanks for your comments, as usual you are always a great help and a great source of advice,, have you had any of my other symptons that i mentioned in my previous thread, ie burning feet but not on the outside, the pain at the top of my leg that feels like a bruise when you are walking or standing, but no bruise is there? cos as stated i seem to be getting weaker and weaker day by day, i think its because of the pains that i have, as they seem to be constant and never go away, it could be that thats dragging me down aswell, also my eyes seem to feel as they are irritated but if you look at them they are not red or inflamed and seem to be more sensative,,, and easily irritated, by heat, bright light etc, cos of all this that is why i said i felt like i was going mad?////// by the time i get my appointment for the lupus centre at st thomas's i dont know what state i will be in, esp if my skin flares up due to all the stress i am going through, i will be turning up there like PUFF THE MARSHMELLOW MAN FROM THE GHOSTBUSTERS MOVIE, cos when my skin flares my face, hands etc swell aswell,,,,,, i just feel really down, and in a bad way, but it was nice to hear from you, and i hope all is well with you,,,,i hope to hear from you soon, sisters,,,,
I can totally understand what you are going through. I am 30 and was diagnosed with lupus three years ago, even though I had some symptoms much earlier. I won't go into all of the details of my problems, but pain has definitely been on the top of the list. I have had so many different types of pain..from burning to aching to pulsing to shooting...you name it. I also experience a deep pain that feels like it's in my bones and thatbruised feeling you talked about. Sometimes I do actually have bruises(although i have no idea why) and sometimes I don't.
I have been on Vicadin (but i'm not on it now) for pain and of course, Ibuprofen. Ibuprofen doesn't help my pain too much, but it does a bit with swelling/inflammation. I just started Gabapentin, which is an anti seizure drug used to treat neurologic pain. It definitely helps me... I am also on a low dose of prednisone now(5mg), Levoxyl (for my thyroid), and Plaquenil.
I know things are scary for you...to be honest, they still are for me. I don't know how or what i will feel from one day to the next.
I have kept a log of my symptoms before to show my rheumatologist and GP. I think this helps, esp. since things change so much. Plus my memory is sooo bad and I am spacey a lot.
I hope you like your doctor/s. It is important. I actually switched rheumatologists in the beginning b/c the first was treating me like I was nuts. I knew I wasn't, but my life had changed dramatically over just a few months. After seeing my current rheumy I felt a bit better in the sense that she treated me with respect and concern.
Hi, sisters3. I've had that "deep inside" foot pain & deep burning pain near hip joints, too. I think you probably have a lot of inflammation, and that makes you more tired yet. Try to hang in there until your appt: get extra rest, wear supportive shoes, avoid sun, etc. The reputation of the clinic is HUGE, from what I've read, so I'm sure you're headed to very competent people. Hope the days pass quickly for you. Hang in there! Bye for now, Vee
hi dragon girl, thanks for your help, it is always nice to know that its not just in my head, and that others are going through the same thing, i think the trouble with me is that for over a long period of time i have been having various lupus problems, ie depression, fatigue, rashes etc, but all treated seperately, and lupus not mentioned its only because the skin rash esp face, hands, etc go very severe, that things started to change and lupus suggested and now it seems that the lupus is showing its true colours, and i am having a lot all at once,,, so thanks for input and advice, and i hope you are well, hope to speak to you soon, sisters,,,
hi veej, thanks for your help and advice, as always you are there for support and guidance, my little guardian angel.... just to say as well have had eyes tested today, and found that my eyes are now quite sensative, ie photosensative the optician called it, and they are dry, he gave me eye drops to put in to help with dryness, and told me how lupus can affect the eyes, i was rather shocked he had even heard of it, as most people including doctors do not know much?????? can you give any advice on this matter, and does it go away or is it going to be happening all the time,, i seem to be having lots of lupus symptons all in one go now, whereas before it was gradual one by one and over a long period of time, that is why i was treated separately for each one, ie depression, fatigue, aches and pains, though not as severe as now,,, its only because things have got bad ie my facial rash, swelling of hands, fingers, feet etc that lupus was mentioned for the first time, is this quite common do you know??? I am worried as to what might happen next, and what type of lupus I might have,,, as i do not seem to be having problems with internal organs,, and what is the muscle condition you mentioned that your rheumi said, when you first complained of various pains in shins etc, well bye for now, hope to hear from you soon, hope you are well, sisters....