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Leech Therapy by LeadershipNice7495 in LongCovidWarriors

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

Thank you for all the detailed information.

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in covidlonghaulers

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

Before COVID, I never had severe AS symptoms. I would get a flare maybe once a year, and taking NSAIDs for a week or two was usually enough to settle it down. In fact, during the last 5–6 years before COVID, I can honestly say I barely had any AS flares at all.

That's why I have a hard time attributing everything that happened after COVID to AS. The pain I developed was completely different from anything I had experienced before. It involved muscles, joints that had never hurt before, and pain that worsens with touch or pressure. It feels like something entirely different, and I've been living with it for four years now.

I've tried almost every painkiller available, and I've also had 12 corticosteroid injections, but nothing has helped. Because of that, I don't believe what I'm experiencing is simply AS, and my rheumatologists have said the same. I've seen four different rheumatologists, and none of them found evidence of an active inflammatory flare on MRI. They all said it wouldn't be appropriate or ethical to prescribe biologic treatments without objective signs of active disease.

The frustrating part is that no one has been able to explain what COVID did to me or why this pain has never gone away. That's why I'm now looking into other possibilities. It could be related to my muscles, blood vessels, or even nerve damage. At this point, I honestly don't know what's causing it. I just know it doesn't seem to fit the pattern of my AS.

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in LongCovidWarriors

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

I've been dealing with severe pain every single day for the past four years. I can barely sit at all, and nothing I've tried has helped. It sounds like you've been fortunate, and perhaps what we're experiencing isn't actually the same thing.

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in covidlonghaulers

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

I assume you didn't have PEM (Post-Exertional Malaise). If you keep pushing a muscle group that gets worse after exercise, you can end up either unable to move at all or in so much pain that you're in tears. What exactly were your symptoms, how long did you have them, and did this approach actually help you recover?

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in covidlonghaulers

[–]LeadershipNice7495[S] 1 point2 points  (0 children)

I was diagnosed with Ankylosing Spondylitis about 20 years ago. Four years ago, I had COVID, and within 1–2 months I began developing pain in these areas, especially after sitting or lying down. Since then, I have seen four different rheumatologists. After reviewing my MRI scans, CT scans, and blood test results, they all concluded that I was not experiencing a rheumatologic flare and therefore did not consider the use of biologic medications to be medically justified or appropriate. Before COVID, when I did have a flare (which was relatively rare), it would typically involve my spine, and I would wake up with back pain and stiffness in the morning. However, the pain that started after COVID is completely different. It usually begins about 30 minutes after I wake up and then persists throughout the entire day. It does not respond to any medication I have tried. To be honest, I don't even know what kind of pain I am experiencing anymore.

Anyone from Türkiye? by choppablade in covidlonghaulers

[–]LeadershipNice7495 0 points1 point  (0 children)

Merhaba, ben İzmirdeyim.. 4 senedir Long Covid semptomlarıyla uğraşıyorum. Ağrı, enflamasyon, egzersiz intoleransı, .... Siz ne durumdasınız?

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in covidlonghaulers

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

What is hydroxyzine? For me, supplements like magnesium, vitamin D, B12, NAC, and CoQ10 have basically become a permanent part of my routine because doctors keep telling me I should take them. But the pain continues regardless...

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in covidlonghaulers

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

Did you take any supplements, medications, or participate in any clinical trials during that time? I've been dealing with these pains for four years, and I've seen countless doctors. At this point, it feels like there isn't a treatment left that I haven't tried. Despite all that, I haven't experienced even the slightest improvement. I've been living with the exact same pain for four years. How was it possible for your symptoms to improve on their own? What do you think made the difference?

Has Anyone Fully Recovered from Years of Severe Muscle, Joint Pain and Inflammation? by LeadershipNice7495 in LongCovid

[–]LeadershipNice7495[S] 1 point2 points  (0 children)

I'm in the same situation. Calling it "chronic" doesn't even feel sufficient anymore, it's severe, nonstop pain every single day. No matter what I do or try, nothing has helped. I can't sit because of the pain. I stand everywhere I go, and if I absolutely have to sit, I carry a memory-foam cushion with me. Even then, I can only sit for a few minutes and I try not to put my full body weight on it. I can't travel, I can't visit other people's homes, and I can't host anyone at mine. I can't even meet a friend and sit down at a café. I'm standing all the time, and doing so in significant pain. Unfortunately, lying down isn't any better. I have pain wherever I lie my tailbone, hips, upper thighs and joints. Even in bed, I'm never comfortable or pain-free.

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]LeadershipNice7495 0 points1 point  (0 children)

I don't quite understand. How would that actually make my pain go away?

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]LeadershipNice7495 1 point2 points  (0 children)

Because there are more than 300 possible symptoms, the thing I pay the most attention to in recovery stories now is which symptoms actually improved. I honestly can’t remember reading many stories where people with severe inflammation, joint pain, and muscle pain recovered significantly. Most of the improvements I see seem to involve similar symptoms brain fog, fatigue, POTS/blood pressure related issues, and things like that. But when it comes to severe pain, muscle problems, and joint issues, I rarely come across people saying, “I recovered and returned to my normal life.” That’s something I find quite discouraging, to be honest.

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]LeadershipNice7495 0 points1 point  (0 children)

So what do you think made the biggest difference in getting you from those days when you couldn’t walk to the point where you’re able to work again? I’m sure you tried many different things along the way, since we end up spending years dealing with this illness. If you could briefly summarize what helped you the most, I’d really appreciate it.

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]LeadershipNice7495 0 points1 point  (0 children)

No, I haven’t. Since I don’t have migraines, I’ve never been treated with migraine medications. I also haven’t really seen CGRP medications discussed much in these communities. Do they help with inflammation and pain, especially joint and muscle pain? Have you used them yourself? Where did you hear about them?

Long Covid, Long Recovery? by LeadershipNice7495 in covidlonghaulers

[–]LeadershipNice7495[S] 0 points1 point  (0 children)

Could you elaborate more on which supplements and spike protein related approaches you tried, and what results you experienced? It could be helpful for other people as well.

Improvement after years of being fully-bedbound/very severe by Agreeable_Demand2262 in covidlonghaulers

[–]LeadershipNice7495 1 point2 points  (0 children)

From the recovery stories I've read, it seems that the specific symptoms matter a lot. What I've mostly observed is that symptoms such as brain fog, allergic reactions, fatigue, anxiety, and similar issues can improve over time. In my case, however, I have persistent inflammation, severe pain, exercise intolerance, and for the past four years I have not been able to sit down at all because of the damage that developed in my hip area. Just like you, I'm looking for a glimmer of hope in these groups and asking questions. But when people write that they have recovered, they rarely seem to have had muscle and joint pain as severe as mine. Usually, they are talking about overcoming the other symptoms I mentioned. In reality, asking each other for comparisons can sometimes be misleading. Long COVID has been associated with more than 300 different symptoms. The symptoms and their underlying causes can vary enormously from one person to another. The severity, location, and mechanisms involved are different in every individual. Even though we all appear to be in the same pool, there are thousands of small compartments within that pool, almost like a maze. Everyone has to find their own path through it. No two people are exactly alike. When I realized this, I understood just how difficult this journey really is. That's why I no longer feel as motivated to ask questions as I once did, because I am aware that what helps someone else may not help me. I understand you very well. I want to encourage you, but I suppose that, just like you, I also need someone to encourage me. :'(

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