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20 year old female with joint/muscle pain + a ton of other symptoms - please help?!

Posted , 16 users are following.

sophie1181
sophie1181

Hi all,

I don't really know where to start with this one. I've been experiencing a number of symptoms since October 2014 and am failing to find a good treatment or diagnosis! I am a 20 year old female in my final year of university and can safely say this final year has been ruined sad 

So, I guess it first started in October with a flu-like illness (my GP hasn't confirmed whether it was flu or not) and since then I have not recovered. This illness lasted for approximately 3 weeks, then I felt better for about two weeks. After this two week period of feeling relatively better, extreme fatigue set in in November and December, along with these symptoms:

- muscle aches

- menstrual irregularities

- brain fog (my short-term memory is now horrific, can't concentrate or follow through with thoughts etc)

- dry skin

- dry eyes

- mild weight gain

I went to my GP and she suggested I have an underactive thyroid based on a strong family history, but this came back normal twice. She said to come back after the Christmas holidays if symptoms persisted.

In December the joint pain started. I first had shooting and burning pains in my knuckles accompanied with some redness but no warmth. Over December/January my MCP joints started to become very swollen intermittently and painful (still no warmth). My shoulders, elbows, wrists, knees and ankles can be added onto the joint pain list, however I have only experienced slight swelling in wrists and ankles. I also have morning stiffness for at least 2 hours, sometimes stretching into the afternoon. In January I also started to experience pain in my lower back, which is sometimes so bad it makes me cry in agony when standing or sitting. The pain in my joints/around my joints improves with movement and becomes worse with inactivity, however as most people will have experienced... really fatigued so want to rest but makes pain worse ahhhh cry

In late January I got a referral from my GP to see a rheumatologist but the NHS waiting time was until June so I was fortunately able to go private. I first saw the rheumatologist in February. He did the normal physical examination, ordered blood tests, x-ray of chest and pelvis and a hand ultrasound.

Blood work has come back normal, as have x-rays and ultrasound. The rheumatologist says its a soft tissue rheumatism which should go away soon and was triggered by the virus I had last year. He said it could also possibly be the start of fibromyalgia. He gave me a Depo-Medrone injection in the bottom and said this would help to make me feel better... all its done is caused me grief. Over the past week since the injection I have had very bad muscular pain all over and other symptoms such as loss of appetite, increased stiffness, nausea, vomiting, diarrhea, dizziness (nearly embarrassingly fell over on the spot in a shop at the weekend), sore throat and worsened fatigue. Just very washed out at the moment. I am wondering if I should see a GP about these side effects?

The pain levels have only increased in my lower back and this pain is starting to move up my spine, with stabbing pain the ribs. My legs and arms sometimes go numb very quickly. Prior to October 2014 I had the occasional hand tremor but I just didn't think much of it - I am wondering now if this is part of the problem. Should I ask for an MRI scan at my next appointment with the rheumy? I am wondering if something like ankylosing spondylitis or multiple sclerosis is the real problem? I really hope it isn't as serious as that but I feel like 'soft tissue rheumatism' doesn't really explain fully the range of symptoms I've been experiencing? Co-codamol and anti-inflammatories such as naproxen are not working for pain relief anymore.

I am sorry for the massive essay! I just want my normal life back and I'm sure so many of you can sympathise with this. I've probably forgotten a lot of things here thanks to my lovely memory problems rolleyes If anyone could provide any insight I will really appreciate it. 

Thanks for reading 

 

4 likes, 21 replies

21 Replies

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  • Gizmo1963
    Gizmo1963 sophie1181

    Posted

    Hi Sophie, I'm so sorry to hear you are experience all these symptoms at such a young age. On reading your recent history it did make me thing it could possibly be either fibromyalgia or CFS/ME but usually you would need to have your symptoms for a minimum of 12 months and all other test results, like tests done already would need to come back clear which the ones to date have done so. I don't think an MRI would show anything much as the pains are muscular and not in your spine or joints. Also the steroid injection you were given would have given you some short term relief which it clearly hasn't. It is such a shame that your illness is affecting your studies in this way - maybe you could possibly ask if your final year can be deferred? I do hope this is nothing serious and you manage to make a full recocery. Also it may be worth posting your experience on the CFS (chronic fatigue syndrome) or fibromyalgia page. Very best of luck xx
    • sophie1181
      sophie1181 Gizmo1963

      Posted

      Hi,

      Thanks for your reply! Sorry for my late reply... the 'side effects' i thought i had from the injection was actually another virus i'd magically caught so I was bed bound for the week! rolleyes 

      I have to say now though that the pain i'm feeling in my back is considerably worse. Last night was a very bad night, I hardly slept because of lower back pain. And earlier I did some weird twist on my leg and the pain just shot up my spine.. I'm convinced there's a problem with my back rolleyes 

      Part of me would love to defer my final year at uni but I've come so far now that I don't feel like it would be worth it, I've just got to push through and try get the degree. Also, I think prolonging the stress of uni might just exacerbate the symptoms further. However, it has been a very tempting thought sometimes.

      I will post it in those forums, thanks for the advice xx

  • carole1948
    carole1948 sophie1181

    Posted

    Hi Sophie.  I'm so sorry to read about your problems, and for one so young.  Unfortunately I cannot assist you or make any suggestions as I do not know enough, only to say I sincerely hope you soon find a solution and can live a normal life again.
  • betty75074
    betty75074 sophie1181

    Posted

    Hi Sophie I am a much older female but have had all symptoms you describe. I had a trauma to my system a few years (7) ago and went from being completely pain free and mobile, energetic etc, to the same symptoms you describe.within 2 weeks. After 13 weeks of unbearable pain, plus chiropractors visits and then doctor, I was diagnosed with Polymyalgia, I was given steroids for 1 year and thankfully after 2 weeks I felt back to normal of course I realise there are lots of illnesses out there that all mimic each other, I still get flare ups of pain especially in the damp Scottish weather but it is bearable and when I feel it is extreme I use Ipobrufen which never worked then as you know when you just need to get professional help.  Some young people also are experiencing similar and being diagnosed with Fibromyalga which is possibly similar pain to Polymyalgia. I hope this website helps you, so many of us suffer from all sorts of conditions with similar symptoms and unbearable pain. Good luck.
    • sophie1181
      sophie1181 betty75074

      Posted

      I'm sorry to hear about your story and how you've had to suffer for so long - you're very brave to have been dealing with the chronic pain for so long! 

      Thank you so much for your words xx

  • betty75074
    betty75074 sophie1181

    Posted

    Will follow your post Sophie hoping for 'better days' as they say, hopefully you will find out what is giving you so much pain. Trhere is always an answer just finding the right one ASAP.
  • nina1007
    nina1007 sophie1181

    Posted

    Hi Sophie,

    Wow i could be reading about my self,

    im waiting for my blood tests,

    did you get a diagnosis

    please update

    nina

    • sophie1181
      sophie1181 nina1007

      Posted

      Hi Nina

      I'm sorry that you too are going through these horrible symptoms! It's an absolute nightmare. 

      Im due to see my rheumatologist next week but I have lots to update him on! He thinks it's fibromyalgia and/or early inflammatory arthritis (I saw a copy of the letter he sent to my GP outlining his ideas about it all). I am in total agreement about it being fibromyalgia but I'm also concerned now that I do have a problem with my back due to recent events. 

      So I ended up in A&E the other night as I had severe lower back pain (pain level on par with a ruptured ovarian cyst if you know what that's like?) and I could barely move my legs because they were going numb. The doctor in a&e was absolutely crap, didn't even offer pain relief or didn't even want to investigate the cause of the pain and numbness?! Just sent me home saying to take paracetamol... I could have slapped him, Iike paracetamol was going to do anything - I already take diclofenac, paracetamol and codeine together 3-4 times a day and that barely takes the edge off my normal pain! So yep went home and cried all night in pain, then got on train with no sleep to go home as it was end of uni term. Couldn't even sit in my seat for more than 15 mins of the journey so ended up walking around an awful lot due to the back pain. Had a relatively ok pain weekend, no severe pain just the normal stuff. Woke up this morning feeling great then two hours later I was overcome by fatigue so now I'm back in bed for the day... Actually thought for once there I was going to have a good day but silly me!

      i will update again once I've spoken to the rheumy about possible ankylosing spondylitis based on worsening back pain and other symptoms that would suggest this. The problem is that all these conditions need time to develop before they become obvious so I've learnt to be patient now sad the only good thing is that my ESR has dropped from 25 to 15 after the steroid injection so I guess it must be reducing inflammation in my body but the pain has increased!

      when do you get your results? I often find blood tests never tell anything about me, they just don't like me and pretend I'm normal every single time. Don't let your rheumy depend on blood tests to give you a diagnosis, many people are seronegative so make sure your rheumy treats you the patient and not the blood tests! In your gut you know how you feel.

      best of luck, I hope you are given some sort of treatment to help you x

  • avey
    avey sophie1181

    Posted

    You have gone through so much as a young person. I haven't answers but am sure you must do more, be more pro-active for your health.  I am much older and have had much the same symptoms years ago. I improved and I've had relapses as well.  Sleep, relaxation, less stress helps.  Light exercise seems to help and again lots of rest and warmth.  Paracetamol seems better than Co-dydramol for pain, at least for me and when necessary I'll take Ibprufen as a tablet or to Ibprufen rub on a painful site.  I have also had painful lumps under my skin on my arms for the past year or so and use patches which help with pain plus using them for muscle pain in my upper and lower back.

    Wishing you the best!

  • sam32365
    sam32365 sophie1181

    Posted

    Hey, I am 21 years old and have been dealing with your symptoms and more such as fatigue and upset stomach, muscle pain , neck pain to where it pops all day for about two years now. mine also started with a like flu! When I read your story I was in shock hope similar it was too mine! I have had tests they are all clear. I get in so much pain I cry also. I feel so not normal. I feel like I can't do anything my age is supposed to do because of pain and I tire easy! but I am in good shape! I don't understand. My life is harder than it was because of this. Please let me know if you find out what it is!! Best of luck I know what your going through.

  • lydia43294
    lydia43294 sophie1181

    Posted

    Do you live in an area where Lyme disease is present? The initial flu-like symptoms, followed by a symptom-free period, and then neurologic and joint pains all are classic of Lyme disease. Lyme disease is progressive if left untreated and attacks the nervous system. It doesn't sound like this is an option that has been considered by your physicians. Cases have been reported in Southern Canada and the U.K. It's incredibly common in Minnesota and on the US east coast.

    I hope you're feeling better by now. If not, ask your doc about this.

  • sonal2701
    sonal2701 sophie1181

    Posted

    Hey !!

    Hope you doing well

    I am Sonal here and my age is 24 and I also have same symptoms from last 18 months...pains are increasing day by day and body's strength also losing...

    If you have got any solution then please let me know...it will be really helpful...and I will pray for you as well..

    stay healthy and stay happy..

    take care..

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