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22 years old, steady decline in my quality of life.. Cant even work anymore

Posted , 7 users are following.

Silverfang
Silverfang

Im a 23 year old male. I have been a healthy and active person until i just randomly got sick one day about 4-5 months ago, it started with my throat feeling like it was going to close up, i went to the ER and they said i just had a sore throat.. Gave me antibiotics and steroids for a week, had no effect. I go back with the same symptoms next week and they say its sore throat just viral, they tell me to wait it out, i wait 1 month and then go back again because at this point ive started to notice my arms and legs were feeling very weak and heavy, i was also startng to get hundreds of muscle spasms all over my body but mostly in arms and legs in the run of a day. All blood work and xrays and scans come back negative, so they send me to an ent. He diagnosed me with globus syndrome, doesnt help me much cus i still have all these other symptoms. I go to a renowned hospital and see a neurologist, they run an EKG on me and more blood work and a plethora of physical tests, he says he is pretty sure i didnt have anything like ms or als but  its been 4 months now and ive just gotten so weak since then, im scared at this point and every day is a struggle, i just wish somebody could tell me whats wrong with me... I do not smoke or drink, i was an active person before this, i dont get a fever or night sweats or anything like that. I do however have lipomas on my back, stomach, ribs, and legs though and some are painful to touch.. Docs always tell me they just do that sometimes

0 likes, 7 replies

7 Replies

  • jackie00198
    jackie00198 Silverfang

    Posted

    Do you have fatigue? It sounds like you do have ME/CFS to me. The sore throat is a classic symptom. Also the feeling of weakness and heaviness in arms and legs. I have that. You need to see a specialist who's knowledgeable about ME/CFS, preferably an infectious disease doctor, or a rheumatologist. The good news is you're young and have only been ill for a few months. If you have ME/CFS, there's every chance that you'll get better, but you must take it very easy. If you try to push  through the fatigue you can get a whole lot worse. I wish someone had told me that when I first got ill. Avoid sugar and caffeine, try to get a good night's sleep, and do whatever you can to de-stress. In this illness, stress can greatly worsen symptoms. 
  • iceblinkluck
    iceblinkluck Silverfang

    Posted

    So sorry to hear what you're going through, I know how frustrating it can be when you feel like doctors aren't listening. My sister has severe ME and the amount she went through with doctors doubting her and claiming it was all psychosomatic still disgusts me. My sister never had lipomas that i'm aware of, though she did/does still have morphea, have you had a biopsy on the lipomas? I hope you get to the bottom of whats going on. I reiterate what jackie said about pushing through the fatigue, doctors tried 'paced' exercise with my sister, which i think had a major contribution, towards her current condition. Stay strong.
  • Tidsel
    Tidsel Silverfang

    Posted

    sliverfang I agree with jackie00198 but am otherwise to tired to write much, other than I do hope you'll find out what is wrong with you. It does sound like ME, but I think the lipomas are a seperate thing, though I also have them. They keep coming.If the same they are triglycerides, but you should have it checked. Some get rid of them by a diet change, you should look into that, diet is really important, as is rest. IF you have money, there are doctors who know about ME who might help you, also in other countries. Good luck.
  • mitty999
    mitty999 Silverfang

    Posted

    Could well be ME, I agree with the other replies. You don`t mention fatique. The type that absolutley floors you. Also do you feel better with lying down  and resting for a day or two ? Not sitting up , but lying down. There is an element of orthostatic stress with ME. It was once known as the lying down disease !!  How about pain as well ?

    Taking codeine can help with paracetamol. You do need to see a specialist who really knows about ME , not just your usual doctor. I have one lipoma but that goes back 50 years and I am told it has nothing to do with my fatigue.There are over 50 symptoms for ME and you do not mention any others. I have over 40 and that was one of the main reasons I was diagnosed. The fact that it came on so quickly is important with this illness. Some specialists will rule out ME if it came on slowly. Mine hit me like a lightning strike over night. From active to bedridden in a few hours. Also, how about headaches too, very common with ME and pain behind the eyes as well. Go to THe Hummingbird Assosiation online. There is a very good symptom checker along with very good advice as well. It should answer

    most of your questions and go into much more depth than the average doctor and if you recognise yourself then it should help a great deal.

    Regards Mitty.

  • Silverfang
    Silverfang

    Posted

    Thanks to all who posted for thoughts and concerns. To answer some questions, yes im very tired all the time. Sleeping doesnt help at all for muscles or the fatigue, and yeah stress definatley worsens symptoms, no biopsys done but i have another appt. Soon and im going to ask them more about that. I appreciate everyone taking the time to help give me an idea of what is going on.
    • beth97678
      beth97678 Silverfang

      Posted

      Ask the doc if you could have infectious mononucleosis.It's caused by quite a few viruses ,the most common being Epstein Barr(glandular fever).Your symptoms sound classic.But I'd expect you to have sweats .Do you have swollen glands in the neck,underarms,groin area?You're just the right age and fitness level for the condition .It seems to hit fit young men the worst.Take it easy, drink 2 litres of water a day and sleep lots.Try not to play any contact sport,as your spleen might be enlarged,and it might get damaged .Take lots of vitamin D and C ,and be kind to yourself.(antibiotics don't work with this virus-just any infection resulting from the septic tonsils).
  • willowsamantha
    willowsamantha Silverfang

    Posted

    ME can be caused by many things.. Usually it's something Viral but can be encouraged by Trauma..

    I got diagnosed last year after going back several times complaining about my fatigue, brain fog and the pains.. It sounds very much like ME but unfortunatly it's not something that can be seen in bloodwork, as it's an immune/nuergological. Ask your doctor to be passed onto an Occupational Therapist, they will do an assessment to rule anything else out, and officially diagnose you with it, many doctors aren't familiar with ME so don't know that much about it.

    Try oversleep, even if you feel like you need to sleep, listen to relaxation CDs, excersise but don't push yourself, make sure you have a balanced diet.. 

    I'm 21 and I can understand how difficult it is for you.

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