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I don't know what to do anymore
I don't even know where to begin. I just feel an overwhelming sense of hopelessness. I've had long-covid since Jan 2022 and it's just been one thing after the next. There was a period between end of last year and early part of this year where I thought I was turning a corner, but I feel like I've suffered a major relapse and now feel even worse than I did last year.
The migraines are the worst they've ever been. My insomnia has returned. Extreme joint/muscle pain. Major GI issues. Weird rashes. Chest pain. Red hands and feet. I just feel like it's a never ending nightmare, that most people don't understand. Unless you've suffered or still suffer from LC, most people don't get it or they think you're making shit up.
I never used to be a hypochondriac before LC, and now I constantly live in fear for my health and life. I worry about chronic diseases, cancer, heart attacks, blot clots... just constant worry that I'll die from this.
I don't know what to do anymore. I am grateful for being apart of this LC program at the U of M. I've seen countless specialists. It's comforting in some sense to get checked and to have doctors that try to help you figure out what's going on. But when tests come back normal, you feel back at square one. And you're still in pain. I just wish I could feel normal again. I feel like I don't even recognize myself anymore.
Thank you for taking the time to read this. I have found that reaching out to others with LC does help. I wouldn't wish this on my worst enemy. But there is some comfort in knowing that there are others out there who understand.
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I am new here -my fiancé has long Covid over two years now.
He is just such a shell of his former self he was a chef and golfed since age of 5 and loved to fish - most of his days now are on sofa now covered with blanket - his neurological and cognition are only getting worse…. He can barely drive he is so uncomfortable in driver seat….his GI system is terrible and constant - Walking our sweet little dog is getting to be too much for him. We are 54 and love each other dearly -I support him any way I can but it is not enough…….it breaks my heart to see him like this and not be able to do a thing - I try to not let him see me cry but we are very honest about our reality which nobody really has a clue (except other sufferers/loved ones). Excuse long text just so sad …so hard to stay positive-best wishes to all 🦋
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2 ReactionsI started taking a low dose of naltrexone for pain and it HAS helped. Also taking Methylene blue for low oxygen levels plus lumbrokanise and loads of vitamins and minerals… hoping for good results..Asking Dr to check lactic acid???
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1 ReactionWhat dose did you start with, and end up with for maintenance? How long did you take it before you noticed pain relief? Also, did your PCP give you a prescription or did you have to get it from a pain clinic? Thanks.
I’ve only taken it for a little less than two weeks. 3mg..it is a compounded drug and comes in a way that you can split in half or in quarters. I started on 1/4 for a week and noticed less pain in my legs at night right away. I am now taking 1/2 and even less pain now. My PCP didn’t give it to me and the Lung Dr. didn’t have a clue…so I found a new Doctor who thinks outside the box ..she so far is awesome.
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1 ReactionI don't know if I asked already, but are you taking LDN for Fibro? Also, any side effects so far? Thanks.
I don’t know what LDN is, so no I’m not taking it.I was on no prescription medicine before I had COVID twice . I was in good health except arthritis ,which I had learned to live with …unless I was having a really bad day. Then,I would take aleve or Tylenol .
Hello and welcome @atassi15 - You are majorly tugging on my heart strings. I'm so sorry for what you, and others I am reading posts from, experience from long-COVID and it's lingering, odd, annoying and frustrating symptoms. Feeling like you are 85 when you are only in your 30's down right sucks. I said the EXACT same thing! Debilitating was the word I used.
Interestingly enough, I have never had COVID, but I know what you are going through and feeling as a result. Since childhood, I experienced hypersensitivity and pain but, never knew why (thought I was just some sort of "delicate flower"). In my early 40's, after having eye surgeries, my symptoms rapidly increased and became debilitating. I had to step away from my job of 27 years. It freaked me out and turned my life, and my family's life upside down. Quality of life had sadly diminished and no one, including doctors and a gazillion tests, did not know or understand why. Meds, procedures, injections... all lost effectiveness. I was in the "cycle of pain".
I believe you, and am happy to see you've found solace with other Connect members walking along side you like @karen8 and @longcovidcelsi. There is strength in numbers. You are not making anything up, it's not in your head. The "popcorn" symptoms that keep popping up and not going away, feeling like a hypochondriac, doubting your sanity...you are not alone - there is hope, my friend.
Here is what my game changing moment was, and I believe could be yours:
Central Sensitization Syndrome - Dr. Christopher Sletten -
- https://www.youtube.com/watch?v=vJNhdnSK3WQ
Please take a moment to watch this video from Dr. Sletten of Jacksonville's Mayo Clinic Pain Rehab Center? I think you will find validation and learn more about your mind and body with regard to being a COVID long-hauler. I think you will grasp what Central Sensitization Syndrome (CSS) and how to help yourself. I want you to be able to recognize yourself again, and you will, keep the faith.
Will you, and anyone else watching the video, please let me know your thoughts and if it resonates with you? Thank you
Extremely good video 😁
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1 ReactionHi….I was you! I deep dived research in many areas to realize that I was a walking poster for Mast Cell Activation Syndrome and this was a whole new world for my body. And it would remain a whole new world so I had to find my path . Please research this area diligently for yourself as the depression aspect of this is also real. I was sick big time, for well over 7 months until I figured it out. I suggest you get on line and really study as you have all the flags and this is doable! You can get your life back! I did although I step carefully and gently through the food issues of life, the devastation of Mast Cell cannot be understated . All of what you spoke of I have had . If you want good web sites Beth 360 is excellent and also Dr Becky Campbell……I began with getting her Optimal Reset supplements to help me get my histamine levels in control. I also use Dr Formulated Once DAily Womens probiotics and Histamine Block as well…….I take Singular and Pepcid AC first thing in the morning. these things help to stabilize your histamine levels. I could not break the cycle until I went on Carnavore Diet……I just couldn’T but began to get well within 48 hrs w this program. I am O blood type, which is based on Meateaters, so maybe that is a reason but I can’t manage to get well on the vegetarian protocol that is so pushed. If you feel like a fit for the flags for this, learn everything you can about living a low histamine life!….it’s not so fun food wise but you get your health and life back!…..God Bless
Agree! Agree!! Agree! The one thing I just don’t get, is that so many people are suffering the same symptoms and they all seem to be related to Covid, but what I don’t get is how tests come back normal. For instance, I have constant postnasal drip which I can prove because the “snot” is present and accounted for as proven to the doctor, however CT scan comes back showing everything is normal. The proof is right there, but the test shows normal. Hair loss the same way. The proof is there, no doubt about it, but all tests to explain hair loss come back perfectly normal. Fast heartbeat, normal test results. On and on. I just don’t get proveable symptoms, yet normal test results. What is it about Covid that causes very tangible, proveable symptoms, but normal results. It makes no sense to me. Makes me feel like a complainer and a hypochondriac.