Could it be lupus?
#grotbags#
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Hi All,
I have been experiencing various symptoms for a number of years now, and have only recently had the courage to see a doctor and have blood tests carried out. These have all come back as completely normal which was a huge relief. However, I booked another appointment for the doctor as I still feel that something is not right, but she basically said that maybe I had been worrying myself for so long that I was making myself ill and prescribed me propanodol for anxiety.
I frequently have tender lymph nodes, in all different parts of my body, I itch every day, mostly late afternoon onwards, I'm always tired, often properly exhausted, I frequently have unexplained bruises, I have sore hands and feet (mostly at night, but occasionally in the morning), which feel like my tendons are stretched. They have been known to burn, but haven't felt that way for a while. I also often see patches of petechaie or purpura in places like my inner elbows, thighs, etc. Over the years, I've had occasional rashes on my hands, and on my temples as well as dry patches again on my inner knees and elbows. I've also had really sore joints, such as my shoulder, jaw, hip, etc to the extent where I can hardly move them, although all at different times. I do feel that my muscles are often generally weak and heavy. There's more that come and go (ear pain, sore throat, shooting pains, mild chest pain, etc) but you get the jist.
I don't want to sound like a hypochondriac and none of my symptoms are unbearable on their own, I still manage work every day, etc but I can't really remember when I last felt healthy.
One thing I keep coming back to is lupus. Does anyone here have it? Would anything have shown up in the standard blood tests? I know it can be pretty tough to live with, and don't want to trivialise it in anyway for anyone who suffers it. As I say, my symptoms are mild and manageable, but I do have them and I feel there's more to it than anxiety.
Thanks in advance.
I have been experiencing various symptoms for a number of years now, and have only recently had the courage to see a doctor and have blood tests carried out. These have all come back as completely normal which was a huge relief. However, I booked another appointment for the doctor as I still feel that something is not right, but she basically said that maybe I had been worrying myself for so long that I was making myself ill and prescribed me propanodol for anxiety.
I frequently have tender lymph nodes, in all different parts of my body, I itch every day, mostly late afternoon onwards, I'm always tired, often properly exhausted, I frequently have unexplained bruises, I have sore hands and feet (mostly at night, but occasionally in the morning), which feel like my tendons are stretched. They have been known to burn, but haven't felt that way for a while. I also often see patches of petechaie or purpura in places like my inner elbows, thighs, etc. Over the years, I've had occasional rashes on my hands, and on my temples as well as dry patches again on my inner knees and elbows. I've also had really sore joints, such as my shoulder, jaw, hip, etc to the extent where I can hardly move them, although all at different times. I do feel that my muscles are often generally weak and heavy. There's more that come and go (ear pain, sore throat, shooting pains, mild chest pain, etc) but you get the jist.
I don't want to sound like a hypochondriac and none of my symptoms are unbearable on their own, I still manage work every day, etc but I can't really remember when I last felt healthy.
One thing I keep coming back to is lupus. Does anyone here have it? Would anything have shown up in the standard blood tests? I know it can be pretty tough to live with, and don't want to trivialise it in anyway for anyone who suffers it. As I say, my symptoms are mild and manageable, but I do have them and I feel there's more to it than anxiety.
Thanks in advance.
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Comments
I'm in my early thirties.
No, not that I'm aware of. Just routine bloods. I asked specifically about HIV and she also mentioned thyroid, clotting, iron levels etc.
Thanks. Can I ask why you're both so sure?
I think your doctor may be right - and she knows your medical history better than anyone on a forum.
Anxiety can cause all kinds of physical symptoms and sensations that, if you obsess about them, can feel much worse or more serious than they actually are. And the fact that you went back after having clear blood tests because 'you still felt something wasn't right' is classic behaviour of someone who suffers from health anxiety ( it is generally no longer referred to a hypochondria). Of course, there are doctors who miss things, or misdiagnose, but this is how health anxiety is fuelled. ( I know this because my MIL has suffered from health anxiety since the 1970s and cannot accept that she is well even though she is 82 and has been perfectly healthy all these years).
I know it's easier said than done to stop worrying, but because you are able to live a normal life accept this as a good thing, and the first step to feeling healthy. Every time you feel a twinge or symptom, tell yourself that it's not a problem and carry on with what you are doing. If your symptoms do become worse, go back to the GP of course, but do try and find a way to deal with your anxiety first.
Thank you for replying. What symptoms did your MIL have, if you don't mind me asking? Any that were physically visible, like the bruising, petechaie, etc?
I had memory problems, tiredness more like total fatigue, general pain, tinglin in my hand and feet, I bruise like a peach, shooting pains up my legs, cold sensations, cysts the list was pretty long I cant remember now, depression and anxiety.
All my tests came back negative and I gave up going back to the doctors, I have however had a lot of improvement since making dietary changes cutting out refined sugars, gluten and dairy and eating as clean as possible.
I know a lot of people have seen improvement in auto immune diseases by clean eating.
I dont know if you have lupus that would be down to the doctor all I can tell you is what helped me. I still don't think I have the energy of your average person but im a whole lot better than I was
I know I could google it, but I always understand these things better when a real person explains!
I have both Rheumatoid arthritis and fibromyalgia and have very similar symptoms to you. I had all kinds of blood tests and the only one that showed anything was an APS one which is a symptom of lupus. After about three years of attending a rheumatology clinic they finally decided that I have "sero-negative rheumatoid arthritis" which means I have RA even though it doesn't show up in my blood.
I have also experienced a lot of bruising with no known reason, some bruises being huge. I am tired all the time and in a lot of pain which started in my feet and hands. I get itchy (although it do have eczema so put it down to that. I have a TMJ jaw which I have had since childhood and causes a lot of pain at times (this is very common in fibromyalgia). The tenderness you have in your lymph nodes could equally be the tender spots you get in fibromyalgia.
I think you really need to see a rheumatologist and that your doctor should let you go if you ask again. Don't be put off by what the doctor is saying because how on earth would anxiety cause you to bruise? If you have to do so, perhaps you could just pay once privately to see one and then when you see them explain that you can't afford any more private visits and it is likely that they will put you onto the NHS to see you again.
Don't give up looking for an answer as I think that these days doctors are too keen to fob you off, especially when you are in a younger age group.
Please let us know how you get on. I remember your name from years back when you wrote about your young son being unhappy at school and I wrote several answers to you, but you suddenly stopped writing about it and I never knew what the outcome was. I have often wondered about it to this day.
Good luck with seeing your GP again.
Me too
It's never lupus
ha ha me too....I have pm'd you I probably don't make any sense so if you have specific questions let me know
I'm guessing you missed season 4 episode 8? ;-)
I would definitely recommend doing what TWS says:
"making dietary changes cutting out refined sugars, gluten and dairy and eating as clean as possible."
I feel like a nut saying it but I was in the doctors on and off for about a year and a half (that's despite living with the symptoms for a long time first)and I get fed up with feeling like they thought I was making things up and just thought well if they cant find anything, im clearly not dying and will just live with it. But the difference now is when I eat properly and clean I have almost no symptoms especially itching.
Thank you Fibromite. I think I will eventually end up back at the doctor and may do as you suggest. I'm not going to back straight way as at the moment my nodes aren't sore and the latest bruises have gone. Plus I have the cold just now, so I don't want anything pinned on that. I do still have the itching and sore hands/feet at night, but at the moment I don't feel as bad as I have in the past. But that is how it has gone for years now, coming and going for no reason that I can really see. I'm going to take the propanadol anyway and see how I go, and look into the clean eating as TWS suggested, as I admit my diet is not what it should be!
Thank you for asking about my son. I did go back about that teacher. She was very defensive, claiming she couldn't remember the incidents I referred to, and saying he was like a "dripping tap", and had "typical only child syndrome" (although he has a half sister). I pointed out that she had never approached me to discuss any problems. Anyway, things became bearable after that and he has had much better teachers since, and the headteacher/depute from that time are no longer there. He is much happier now, but he has never forgotten how he felt in her class
Thanks for the reply. No, the doctor was lovely and was trying hard to put my mind at rest, but she is not my usual doc, just a locum. I haven't been to see my own GP since 2009 (other than for minor things like contraception, etc) when I mentioned the petchaie and the fact I was having to wee about a dozen times before bed. At that time I gave a urine sample which came back clear. As I said, I'll give it a few weeks and see what symptoms come and go, as at the moment they are not as bad as I have experienced before.
Thanks TWS. Any advice on this would be appreciated. I do eat too much refined sugar, bread, dairy etc, and I do often suffer for it (if you know what I mean!)
That was funny. The one time!
I work with a hypochondriac who drives us all mad with his 'symptoms'. Lupus was one of his self-diagnoses to which most of the office took glee in telling him 'It's not lupus'. Eventually the doctors told him that too.
One of my hips clicks quite often, but other than that no, I wouldn't say so.