Pain and symptoms for 3.5 years in previously extremely healthy 24M - all daily activities impossibl

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So I don't even know where to begin, because new symptoms pop up every few months, and everything is worsening with time.... I'll try to give a VERY brief summary, I do have a lot more info written already if anybody actually wants to try to help. I'm not sure if this is an autoimmune disease or not, but several people told me that it sounds like some kind of autoimmune.

3.5 years ago I was a perfectly healthy 24yo guy, ate well, did tons of sports, had 0 health issues my entire life, I always considered myself lucky to have had such a perfect life. I was backpacking SE Asia at the time, and towards the end of my trip I started feeling sharp pains in my left flank region. Every little bending movement such as picking up a glass of water or getting into a car would result in very painful sharp pains. These very intense pains lasted a few months and eventually became more bearable. But the pains never fully disappeared – to this day, my left flank region flares up when I do very trivial movements – if I’m sitting or lying down for hours then it’s ok, but if I walk for 1 minute or do anything remotely physical such as set the table, it starts hurting. It doesn’t hurt as sharply and as strongly as 3.5 years ago, but it’s always there.

When I did try to go jogging or play sports or do anything, the pain would become much more severe again, so I was forced to live a very sedentary lifestyle. A few months after the initial pains, I started having a lot of gastrointestinal issues – I had stomach aches for hours every single day, I had excess gas and a noisy tummy 24/7, I had diarrhea very frequently… but for the first ~2 years at least everything was localized to my flank/stomach area, and as tough as it was, I was still living with it and trying to remain myself by going on hikes, bike rides, enjoying things.

Sometime in the past 2 years I’ve started developing numerous other unexplained pains all over my body. Many pains start randomly and disappear after a few weeks/months, and on every given day I have multiple different very painful pains. My right knee and right shoulder started really hurting me 1 year ago and I feel like I’m getting more and more strange pains with time and my condition keeps worsening. For the past few months it's been very hard to walk because every step really bothers my knee. And my right arm is almost useless because anything I do with it hurts my shoulder - simple things like picking up a towel, putting on clothes, lifting the blanket off me in bed - I slowly learned to always use my left arm because my right arm couldn't handle it.

My right hand is also EXTREMELY cold almost all the time. Just the fingers, from the wrist down, my right hand feels like ice all the time. My back/shoulders/neck are in pain and sore 24/7, it's just become a fact of life, I've just gotten used to the fact that they always hurt and I can never be remotely comfortable.

Another strange thing that's been happening to me is that last year I started developing tremours and extreme muscle weakness all over my body. I first noticed it with my fingers, they shake a lot when I type on my laptop or on my phone and when I eat I need to focus more on being steady. But it's absolutely every muscle in my body that whenever it's not at rest starts shaking/tremouring a bit, as if there is no muscle. It's really scary.

Last symptom: all my joints pop (not click, but literally pop, I can hear and feel something move) from any tiny movement. Lifting my arm up results in a big pop, running my hand through my hair results in big pop in my wrist, getting up I feel my hip pop, if I bend my elbow I feel the elbow pop. It feels like I'm being completely torn apart from inside....

The last strange thing is that most symptoms are way worse when I wake up, and are best late at night (very late, after midnight). It's a huge difference, night and day, between the night time and day time  [smile]

My entire life has been on pause for 3.5 years, I went from being the most active person I know to someone who even getting dressed or taking a shower is a big painful struggle. I've seen dozens of doctors and spent thousands and thousands of dollars and hundreds of hours researching, and so far the only thing I get is all blood tests being normal and I'm told it's no big deal. I would so so so so grateful if you can help in any way - I literally do not have a life or a future right now and spend about half my awake time in too much pain to do anything.

Symptom summary:

- muscle pain in left flank almost 24/7

- pain in left SI joint almost 24/7

- pain in lower left ab

- gastro issues (diarrhea, bloated 24/7, gasy ALL the time, stomach aches daily)

- distended areas in stomach

- right knee and right shoulder almost unuseable

- all joints popping constantly from any movement

- very cold right hand fingers and stiff fingers

- tremours/shaking in all muscles when not in rest

- different pains in different body parts daily, seemingly random

Thank you!

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9 Replies

  • Posted

    Hi Dean at 78,

    You do not say what medical professionals you have seen. It is easy to try and google our symptoms and treatments but it is much better to get the advice of a medical professional who can actually examine your body and do tests as needed. If your GP (a general practitioner) does not know or you feel robbed off then ask to be referred to someone who will know.

    Best wishes, Joanne

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    • Posted

      Hi Joanne 

      I can't find a way to edit my post, so I'll give the list of docs I've seen here:

      Tropical disease specialist, urologist, gastroenterologist, osteopaths, chiropractors, internist, rheumatologist, naturopath, neurologist, acupuncturist, physiotherapist (I've also seen psychologists and even spiritual healers and very alternative healers...)

      They haven't come up with anything yet.

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    • Posted

      I'm actually in Canada. I haven't seen an immunologist, but I did have someone just yesterday suggest that. I never even knew that prefession existed before! I've made a note to ask my GP for a referral to one. Thank you!

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  • Posted

    I'm not a medical pro- just someone with systemic lupus & reactive arthritis.  Have you had an MRI or cat scan during a flare-up of your si joint?  I'd get that done during a flare and see if it shows inflammation.  Your gastro symptoms and si joint (sacroillitis) could be related to reactive arthritis or ankylosing spondylitis (and yes, it can be chronic) (& painful).  You can get checked specifically for the HLA-B27 gene by a rheumatologist who knows what to look for.  Here's some info:  How Is Ankylosing Spondylitis Diagnosed?

    A diagnosis of ankylosing spondylitis is based largely on the findings of a medical history and physical exam. Radiologic tests and lab tests may be used to help confirm a diagnosis, but both have some limitations.

    Medical History

    The medical history involves answering questions, such as the following:

    How long have you had pain?

    Where specifically is the pain in your back or neck? Are other joints affected?

    Is back pain better with exercise and worse after inactivity, such as when you first get up in the morning?

    Do you have other problems, such as eye problems or fatigue?

    Does anyone in your family have back problems or arthritis?

    Have you recently suffered from a gastrointestinal illness?

    Do you have any skin rashes such as psoriasis?

    From your answers to these questions, your doctor can begin to get an idea of the diagnosis.

    Physical Exam

    During the physical exam, the doctor will look for signs and symptoms that are consistent with ankylosing spondylitis. These include pain along the spine and/or in the pelvis, sacroiliac joints, heels, and chest. Your doctor may ask you to move and bend in different directions to check the flexibility of your spine and to breathe deeply to check for any problems with chest expansion, which could be caused by inflammation in the joints where the ribs attach to the spine.

    Radiologic Tests

    X rays and magnetic resonance imaging (MRI) may be used in making or confirming a diagnosis of ankylosing spondylitis, but these tests have limitations. X rays may show changes in the spine and sacroiliac joints that indicate ankylosing spondylitis; however, it may take years of inflammation to cause damage that is visible on x rays. MRI may allow for earlier diagnosis, because it can show damage to soft tissues and bone before it can be seen on an x ray. Both tests may also be used to monitor the progression of ankylosing spondylitis.

    Lab Tests

    The main blood test for ankylosing spondylitis is one to check for the HLA-B27 gene, which is present in the majority of Caucasians with ankylosing spondylitis. However, this test also has limitations. The gene is found in much lower percentages of African Americans with ankylosing spondylitis, and in ankylosing spondylitis patients from some Mediterranean countries. Also, the gene is found in many people who do not have ankylosing spondylitis, and will never get it. Still, when the gene is found in people who have symptoms of ankylosing spondylitis and/or x-ray evidence of ankylosing spondylitis, this finding helps support the ankylosing spondylitis diagnosis.

    My other guess would be Crohn's, (or IBD) maybe.  But the joint involvement tells me it's more systemic than Crohns or IBD.  Do you have any eye issues?  Recurring uveitis is a biggie with AS (I hate it and get it all the time). It's inflammation in the iris.  You don't have to have it tho to have AS (ankylosing spondylitis)

    As far as Rheumatoid arthritis, I'm sure you've had an RA Factor and an anti-CCP antibody test for dx.  I'm assuming you've seen rheumatologists..

    Also as far as mixed connective tissue disease, they often overlap, and the best test to have is a Direct ANA Panel which will separate the antibodies and give your rheumie info on where your disease is pointing.  Most people get just the one ANA test-a TITER test, but I'd like to suggest you have the PANEL done, as it's much more specific and you can be negative on the titer but positive on the panel.  Also remember these proteins of autoimmune disease don't always show up right away in your blood.  Sometimes it takes testing over and over to hit it at the right time.  

    You should also have a CRP (C-Reactive Protein) test to look for inflammation in your blood and an ESR (sedimentary rate) also to check for inflammation.  Testing your C3 and C4 complements in your blood is also helpful to show if you have something autoimmune going on.

    And DON'T GIVE UP!  Lots of us wait long long times for a dx.  Hang in there.

    Btw, I'm JJ, nice to meet you!

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  • Posted

    Oh and I"m sure you know, the cold fingers sound like Raynaud's Phenomenon, common in mixed connective tissue diseases.  sad

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    • Posted

      Thanks for all that info! I haven't heard of mixed connective tissue or Raynaud's before. I'll look into those a bit and bring it up with my GP if it looks potentially promising. As for everything else you mentioned to test, I've had them all checked.... I do have some new research to do now. Thank you JJ smile

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    • Posted

      This echoes all my thoughts exactly. Very well explained by jujubee. I suffer from Behcet's which is similar to Lupus but with the added joy of ulceration. She has given you a very clear blueprint of what has to be done.

      Getting a diagnosis can be hard but it is very worth pursuing. Treatment will make you feel so much better. X

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    • Posted

      Currently, I would just be happy with a diagnosis. So that I would know what my limits are, what exactly I can and cannot do, why, and what I should avoid and what I can expect. Treatment is a bridge I'll cross when I get there smile

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