esr levels of 29 doctors says lupus

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I have had 2 blood test in over 2 weeks and both with esr levels of 29, im a 23 yr old female and dcotor said very high for my age. She said it could be lupus. I have had a headache for over 2 months, I have had a neck ache which feels tight and going into the back of my head for around 3 weeks on and off and only a heat pad will help it calm down. I get achy knee on my left side sometimes but not all the time and i sometimes get the odd back ache are these signs of lupus as I suffer with anxiety and this is so worrying I havent felt right for over 2 months have seen all gp at my surgery and been given anti-biotics left right and centre. Have been told have fluid in ear and maybe the head ache is sinus related and that could be why on esr levels are raised. Im so scared I have something wrong what do I do? Doctor said too take another 2 week course of anti-biotics and go back if still feel the same for another blood test . Any advice would be appreciated Thank you

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  • Posted

    Hi Chelsea your very young, first are you double jointed if you are that could be the cause of your headache. If not then migraines are quite common as is sinusitis. 

    However speaking from my personal experience it might be wise to ask your GP to do a blood test called an ANA. I think GPs tend to dish out antibiotics like sweets and we know while they do help too many can make us resistant to infection. For the sinusitis try an old fashioned remedy buy some Karvol capsules from a chemist into bioling hot water, put a tea towel over your head and breath in the vapour but try not to tip the water over you or you will scald yourself too. If that doesn't work then GP for a blood test and good luck🍀

     

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    • Posted

      Thank you for your reply. I will be going back in a week after these antibiotics and been asking for different blood tests as getting really worried now. I'm not double jointed but have always had achy clicky knees from when I was about 12 and I still get it now so not sure if that's anything too do with it ? But will try what you said for my sinuses smile thank you

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  • Posted

    Hi ChelseaLouise33

    You may have the symptoms of Polymyalgia Rheumatica. The pain in your head may be Arteritis that can develop because of PMR. PMR affects the muscles on both sides of your body

    It can then progress to Arteritis that affects the arteries in your head causing very bad headaches.

    I have PMR and being treated with steroids. My ESR levels were high and bordering on Lupus..

    I would most definitely stop the antibiotics because PMR is an autoimmune disease which involves the immune system attacking the body and the AB's will weaken the good probiotics in your gut.....and return to your doctor and discuss PMR and Arteritis with her/him......best wishes....

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    • Posted

      Thank you for your reply I have been reading up about the conditions you have been speaking about and some of the symptoms are what I have the headache isn't bad it's just annoying sort of thing. The pain in one side of my neck is the worst pain but then it isn't terrible. I'm not in bad pain it's just pain that you know is there it's more of an ache than a pain.

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  • Posted

    Hi

    Forgot to mention polymyalgia rheumatica starts with pain in the neck and sometimes shoulders..and go to the back of the head.....

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  • Posted

    hi, yes this sounds exactly like Lupus to be honest. Lupus is a form of vasculitis and I have another form called Behcet's. Very similar to be honest in the symptoms. I even get the Lupus rash. A lot of people who suffer from vasculitis suffer anxiety an/or depression

    But please don't worry too much about it. I am 53 years old and currently leading a normal life running my own business and my symptoms were pretty awful at one time. I am currently symptom free with a good medication regime. Please don't think of it as some kind of life sentence. I know it can vary greatly from one person to the next but medication will seriously help. 

    You just need to get a diagnosis and get on with sorting out a proper approach to controlling it. By the way, I had the ear and sinus issue too along with my symptoms. They are all symptoms of this kind of auto immune disorder. xx

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    • Posted

      Thank you for your reply. Doctor said she thinks the esr is raised due to sinus infection but then before that mentioned lupus. I have too go back in a week for different bloods so just hope I get some sort of diagnosis. Thanks again
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    • Posted

      yes this is hard to test for and your GP won't necessarily have the specialised knowledge to diagnose. But I hope things settle for you. It's great you have a good doctord because a lot of them this possibility goes right over their head and people struggle to get diagnosis. 

      Hope for your sake it is something else but as I said before....not the end of the world. Try not to get too stressed and take care x

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    • Posted

      Thank you so much I'll try not too worry but I suffer with health anxiety and my mind is just going round and round. I don't want it too cause any problems with my brain then I'm worried it could be that it's just worrying thoughts going round and round. Just hope I get an answer and some help as cannot live like this everyday. Thanks so Much for your reply xx

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  • Posted

    I meant to mention, I also got the back pain, knee pain and foot pain too at times. 
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    • Posted

      Hi margaret22116

      To diagnose Lupus or Polymialgia Rheumatica you have to be referred to a Rheumatologist who will diagnose your condition. When you say you have knee pain and foot pain is the pain in both feet?..

      because PMR is a condition whereby pain is felt on both sides of the body.  If  Lupus, pain is usually felt in random joints.......I do hope you can get a firm diagnosis soon because half the battle is knowing what you are dealing with......sincere best wishes for a speedy diagnosis...

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    • Posted

      Hi maragret22116

      I didn't realise you had been diagnosed. I'm sorry I misread your post. Autoimmune Diseases and stress don't go together they can cause great anxiety, so try not too stress too much. I know easier said than done I stress with my condition - PMR- but getting better at dealing with it.....best wishes with your treatment which obviously you are happy with....razz

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  • Posted

    The ESR is an indication of inflammation - that's all.  You GP sounds wise as infection causes inflammation, an injury can cause inflammation as well.  He is thinking of the most likely reasons for inflammation but the ESR in and of itself is not diagnostic of lupus in & of itself.  There are blood tests especially looking for lupus (i.e. The ANA, specific DNA testing looking for markers, etc)

     You should address your concerns re: lupus.  If your questions are not answered perhaps you should have an appointment with a rheumatologist.  You are young for a lupus onset - not to say it doesn't happen but most are not diagnosed until in your 30's-40's.  I have all of the symptoms but my labs do not support the diagnosis.  I have gone thru everything you can imagine including many surgeries, work ups for lupus by multiple rheumatologist so who have told me lupus is difficult diagnosis to make and many things must be ruled out before the rheumatologists will confirm the lupus diagnosis.

    if you have concerns speak up to your GP ask if you can see a rheumatologist.  If you have family members with the diagnosis of lupus (or any other autoimmune disorder like Rheumatoid Artritis). You need to discuss this with your GP as these disorders can have a familiar history (or it can run in families).  But not always...I don't have a family history.  Also while you may have signs and lab work supporting an autoimmune disorder there are several that mimic lupus like fibromyalgia or RA.  

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    • Posted

      Hello thanks for reply. I have been back too doctors this morning as have a horrid headache for 2 months but lately past 2 days has gotten worse with more neck pain. Doctor looked into my eyes and no pressure there which is good she said the marker isn't too high as mine should be 1-19 and it's at 29 and as you said could be anything from a chest infection to lupus she said she would be more concerned if it was over 40 or so. I have been given more antibiotics this time for urine infection as she done a dip test and was very cloudy so has sent that off. And if the doxycycline antibiotics I'm already taking dint make me feel better next week I have too go back for further test. But fingers crossed all wil be okay. I thank you for replying as helps too speak to other people who understand. The pain in my head starts at my neck and mainly is in the back of my head so doctor said that may also be tension as I get very anxious and stressed. X

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    • Posted

      yes I think it is time for your gp to refer you on. As it happens they won't be able to diagnose or rule out Lupus. My inflammatory markers are only slightly raised with auto immune disease. IT takes a lot of expertise to diagnose this or to rule it out. Good luck. x

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    • Posted

      Mary, I see you are under a rheumatologist already. I know Lupus is difficult to diagnose but it is often diagnosed on history. If you have ongoing issues and no diagnosis I would go to another specialist. I take it you have treatment? I also don't think that the familial connection is not a strong factor either. People without Lupus in their family develop the condition. 

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    • Posted

      Who are you and since when do you know anything about me?  Everything I told Chelsea is backed by research and in keeping with the Amercan Lupus Foundation.  What I told her has nothing to do with me.

      Do I have sle? Absolutely.  Have I gone to another rheumatologist?  I've gone to 5 in 15 yrs.  Do I have other specialists? Yes, I have neurologists, neurosurgeons, orthopedic surgeons, pain specialists, Rheumatologists, gastroenterologists, dermatologists, counsellors, and so on, and so on.  Are there other problems bedsides lupus?  Yes I have severe neuropathic pain which may be (or not) related to lupus.  I am an avid reader and retired nurse practitioner - after 20 yrs. of suffering from lupus as well as intractable nerve pain there are a few things I have to offer this poor woman.

      Now a few questions for you - do you make it a habit of challenging and discrediting other's advice?  Are you an MD or are you just one who feels you have to give advice to everyone because you know it all?  I didn't ask for  your opinion in judging my care, and I sure don't need or want it now.

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    • Posted

      hi Mary, your aggression towards me is interesting but unwarranted. You posted on a public forum and I didn't come here to argue with people but to share tips advice and opinions just like everyone else. Know it all? No I certainly don't. But I post on here because I care about what is happening to other people who are struggling to get a diagnosis just as I did for years. Yours is not the only valid experience or opinion. 

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