Not diagnosed yet

[Painfulboy03]

Well today I saw a rheumatologist and explained the long list of symptoms to him and he got the Ana test results which were taken I believe in the beginning of summer . The results were 1/80 but now they are gonna do more blood work and everything . My symptoms are joint pain , mainly knees and elbows , hair loss , hot flashes , fatigue , stiffness when waking up in morning . And another symptom which is not related to this but scares me .. Abdominal pain in left side under ribs . I'm worried sick . My main concern is these hot flashes .. Please has anyone gone through this ? I'm only a 16 years old male , and I'm worried sick . My mom thinks it's all in my head and says she's tired of hearing me complain and complain . My bones ache and I get really hot which is then followed by the chills . I hope someone is out there knowing what I'm going through .

[Nikki246]

I think it's very hard for people without Lupus to understand it. It has taken ages for me to get even a Dr to listen to me. It took 7.5 yrs to get diagnosed, don't give up and if you get a Dr that doesn't listen ask to see someone else. For me the fatigue was the hardest to get people to understand. People just think you're lazy or a good nights sleep will sort it out and it doesn't. Try and keep out of the sun as that makes it worse. Wear a hat and plenty of sun cream when you do go out as it does help.

Maybe show your mum this page or ask her to read up about Lupus.

I don't suffer with the stomach pain you describe so no help with that however it doesn't mean it's not a symptom as everyone is different. Although I get a slight rash across my face my main butterfly shape rash is on my left wrist and it's my left side I have most of my trouble. My Lupus affects my skin and my muscles, I'm currently on steroids for a flare up.

Keep a diary of symptoms and take it with you when you see your Dr or Rheumatologist as you may forget things when at an appointment.

Does your mum go with you to appointments? If not get her to as it may make her understand it a bit more and you need a bit of support (I'm 39 and I took my mum with me as my partner was at work.) When I was first diagnosed, even though I releaved in someways as someone had finally listened it was still a shock (that day I was on my own and it was horrible).

Good luck and and keep coming on here to chat as we are all in the same boat. No one on here will think it's in your head, keep asking questions too as it will help. Fingers crossed you get an answer soon and you start getting treatment.

[Hidden]

Hang in there Painfulboy03 - the not being diagnosed, not feeling believed (even by your mum) and feeling fearful of symptoms and what may be wrong are just the worst worries. Your quest for answers to explain your symptoms is a brave one. Your mum should be proud and concerned for you - and she probably is deep down but, like many of us mums, has a very strange way of showing it. She doesn't want you to have a chronic illness so won't face the reality that you are living with everyday. My late mum was just the same and the result is that I find it very hard to trust my own symptoms or acknowledge pain.

Try to educate her gently but failing that just keep pushing for answers and hopefully you will get these in the end. Twitchy

[Sami1982]

I suffer all the symptoms you have including the stomach pains. At first I thought it was my kidneys but it turns out to be muscles, all major organs have been checked and are ok at the moment. Lupus attacks the muscles around my rib cage so sometimes it feels like stomach and kidneys and it really does hurt but normally doesn't last too long.

It's hard for people on the outside to understand, I struggle from fat to day with different symptoms. One minute I change chasing my little boy around and the next minute I will hardly be able to walk.

I've had lots of appointments in the past 8 months and on top of hydroxycloriquine in now on methotrexate to see if this drug can help with all my symptoms.

If you feel unsupported show you Mam this site so she can seek its how this disease can effect so many people in so many different ways. This community has helped me sonics over the past few months to actually understand my illness so your in the right place for cyber support just hope you get a little more from your family. Don't worry to much just take it as it comes and ask any questions you need to no matter how insignificant they may seem

[Cann]

Good they are going to do more tests, Painfulboy03, but immune system problems are not always easy to diagnose, although I have found all GP's I have seen, quite sympathetic and supportive in the natural approach to my health issues.

My GP recently suggested tea tree oil for my sore fingers/nail problems.

I suffer or have suffered all the symptoms and more, that you have mentioned. The hair-loss included, but the stress of worrying about it all exacerbated them all.

I decided to take the positive approach and trust my body to heal.

I went the natural route and changed my diet for good wholesome food cutting out foods that cause joint pain, hot flushes, fatigue, etc. - i.e. processed foods in particular and bought drinks.

I was diagnosed with thyroid problems - are they going to check those, too, because males can suffer this way as well as females?

Do you have a lot of anxiety in your life in addition to the symptoms, I mean or may be one area that you could change to alleviate the stress?

Controlling the stress is vital with immune problems and taking charge of your health.

Sadly, your mother is not alone and I had awful remarks made to me when I was very ill and the anger I experienced and frustration of hearing those remarks just made them worse.

Now I take the attitude - they can think what they like and say what they like, but I know my body.

Be careful what the health service does to you, too, check every test and treatment and do your own research on what risk/reaction it could cause - ask questions, because I know what happened to me. Trauma to the body can also exacerbate immune problems.

It is very difficult when you feel unwell to be strong - you feel vulnerable, but this is a world of survival of the fittest, so be aware.

This website is where you can tell all, but out there even with family - those who don't understand can be very hurtful and we do have to be strong even though we are very sensitive people generally, I believe.

Do what you can to help your body whilst waiting for tests and that includes EMF's - they have far more effects on our health than we realise including Wi-Fi and even the weather.

All the best and keep positive.

[PMRpro]

As the others have said - your mum is probably very scared herself and so finds it difficult to sympathise with you when she knows she can't do anything to help. There is this idea that boys shouldn't get upset/be ill/expect sympathy - and it is particularly bad in English-speaking countries. Don't ask me why...

It does sound very much as if you have some sort of autoimmune disorder - it may or may not be lupus but it also sounds as if the rheumatologist is investigating because he believes your description of the symptoms so at least that is a start. Autoimmune disorders are quite difficult to pin down so you may have a bit of a wait for a definite label.

There is a Facebook page

facebook.com/spooniesforlife/

where you might find other young people of a similar age to chat to and get info from.

This site is also aimed at people with chronic illness and the particular page link I'm giving you helps explain how you run out of energy for the day far too soon when you have an autoimmune illness because of the fatigue side:

butyoudontlooksick.com/arti...

There's lots more there to read.

Once you have a diagnosis your rheumy and his team will talk to your mum and the hospital may be able to put you in touch with support groups for teenagers.

Good luck - all of the people on these forums know how you feel even if lots are older. Some aren't though and I'm sure you can "get together" with them online.

[LuckyJC]

I get exactly the same pain on left side ribs, and a lot of your other symptoms too. I found that the hot flashes were my thyroid so I would ask your GP if they can test you for that as its common for that to go hand in hand with lupus and other autoimmune diseases - they seem to come in 2s and 3s. My mum was similarly unhelpful when I first got ill but as time has gone on and my quality of life has continued to deteriorate she has realized that this is something I can't control or just 'get on with'. It definitely helped that she came to some appointments with me - I think sometimes parents are willing to hear things from professionals that they won't take from their own children. But remember, it's you who's experiencing this and you know your body best, trust your own instincts and eventually others will catch up with you. Xx

[Painfulboy03]

Guys I appreciate all the feed back . Yes it's very tough knowing school is in 2 days and I'm laying in bed with achy joints . But yes they are gonna be doing lots of tests .. I'll name some of them .. ( Cmp , tsh , t4 , esr , Cbc , rf , hlab, Ana ) a few more as well but what sucks is the labs are apparently open on week days .. ( what my mom said ) so I have to wait . Which sucks because school .. Like this is just stressing me out and yeah . I'm trying to chill out . I just want to go through all the blood tests now because I feel if I wait any longer it'll be too late just in case it's something worst . As of more information my grandmother does have lupus and her too thinks I'm making all of this up . Like isn't that some bull crap .. /: well I know I'm not alone . I thank y'all so much . And I'm gonna be non stop on here . I know I'm young , but I also know that I know my own body and something isn't right here .. And something I forgot to mention. They are mostly concerned with me losing weight. Yesterday it said I weighed 115 which normally I'm 123 . Does lupus cause weight loss ? I've heard it does from doing research but I want to know that this is normal being that this scares me . I've had past blood tests with everything normal . That's when later they did a ( Ana ) and it showed 1/80 . So I'm scared that my weight loss is something scary . But thanks to everyone with feedback . I know I'm typing so much but I just want everyone to know what I'm going through and how i feel ..

[Debrad in reply to Painfulboy03]

Hi there!! Please continue with the testing, as everyone said it can take sometime . 2 yrs ago when I was diagnosed, I had many of the same symptoms you are having. I lost my appetite, grew VERY fatigued, it really was an effort to get up in the morning,

and I lost 22 pounds in a little over 2 months !! I got really scared. I also had the joint pain, it seemed like in new parts of my body everyday, and left sided pain. Thank God, the first rheumatologist I saw, did tons of blood work and they came back as lupus. At least I had an answer! I was on prednisone & plaquenil for year and a half, and it really helped with the pain.

I did feel somewhat better and came off those meds. I still struggle daily, but controlling the stress & anxiety was the key. As new & different symptoms hit you, it's really hard not to be scared!

Good luck with all, come on here often & definitely keep a journal as to how you feel each day!! Please keep us posted 😊

[Painfulboy03 in reply to Debrad]

Thanks for the feed back ! So 22 pounds ?? So yes lupus does cause weight loss considering the fact that you found out it was lupus ! So everyone here is into the same boat . I will try to keep a journal and jot down notes! 😬 But again thanks for the amazing feed back ! 🙏

[homemaker]

I have very similar symptoms & have gone through various tests & yet undiagnosed.

I suggest you get your Vitamin D checked & ask your doctor to take it from there.

It worked for me Vitamin D ( 50,00IU) & prednisone ( Steroids) for inflammation.

Hope you get your answer soon. 🕉

[vaderviper]

I would want to rule out any autoimmune disorder [especially Lupus].....even though you are young and male. Lupus for example occurs in women 90% of the time and often is diagnosed between the ages of 20-45. Even RA (rheumatoid arthritis) can cause many of your complaints. I would suggest you have all theses blood tests performed:

ANA

ANTI dsDNA

ESR

CRP

CBC

KIDNEY & LIVER ASSESSMENT

URINALYSIS

aPLs

Ro/SS-A

La/SS-B

Also, an MRI of the abdomen could be of value.

I feel you are too young to be suffering this much and have this much anxiety. I would rule out (or confirm) everything and anything. I would also do the following:

ANTIBODIES TO SM AND RNP (your Dr. will know what all theses tests are). I know this is overkill, but I would not allow a 16 year old patient of mine to suffer like this.

Please email me if I can be of further help.........and GOOD LUCK!

Dr. S.

P.S. BTW: There is nothing in the abdomen on the left side where you describe pain, it could be referred pain from somewhere else.

[lotsoissues in reply to vaderviper]

Could be spleen ?

[vaderviper]

I would also suggest that all your hormone levels be checked as well, i.e. thyroid, DHEA, DHT, testosterone etc.

Dr. S.

[Painfulboy03]

Yes thanks for the information they are going to be on top of it hopefully . So far I got this medicine called ranitidine 150 mg . Specialist said this will help my tummy aches so hopefully it does . Baby steps as to finding out what's going on guys .. As for now my main concern is still these hot flashes . My heart does beat a lot which leans me towards thinking I have a thyroid disorder. I may only be 16 , but I definitely know my body !!

[Painfulboy03]

Did like 16 different blood tests , need to now turn in a urine and stool sample tomorrow .. Also need one blood test which requires fasting . And today I noticed I was playing basketball and my throat feels inflamed and I was breathing heavily. Also I kept coughing and there was some wheezing as well .. Man oh man what's going on with me ..