MicroBlog Monday: Chronic

I have something to admit. I’m not doing okay. Every joint and muscle in my feet, legs, back, and hands ache and burn. I am so tired when I wake up, even if I got good solid sleep. I took a shower just now and want to curl up in a ball and cry myself to sleep.

This has been going on for over two years, though this week is one of the harder ones. I went to a doctor two years ago. She ran a couple tests that had confusing results and then gave me a referall to a podiatrist that I didn’t waste my time at. I need to try again to get a doctor to help me. If I went today, I would probably just start crying.

It feels like admitting defeat. I have always been so full of energy and could do anything. I used to bike 10-15 miles a day and go out dancing after. I am currently dreading folding laundry, going to work, or washing the serving bowls and trays from the party yesterday. Something has to change because I can’t keep doing this.

About JennP

Single mom by choice, lesbian, natural living, parenting, car free, Chicago.Thank you for reading and feel free to leave a comment!
This entry was posted in background, body talk, Microblog Monday and tagged . Bookmark the permalink.

36 Responses to MicroBlog Monday: Chronic

  1. Lindsay says:

    I’m sorry, Jenn. This is no way to live and you owe it to yourself to see a doctor to try to get on the path to wellness. Go today if you can. If you cry, so be it. I’ve cried in front of my doctor plenty!

    Do you think it is mental/physical or a combination of both? Sounds a bit like a form of arthritis to me.

  2. I likely have to work today. I’m concerned it’s RA or another AI disease or fibromyalgia, which doesn’t really have a well known cause. I know that if I eat dairy, even a tiny bit, then I am worse. I bet there is a psychological/emotional aspect but not the only cause (like pain associated with depression can be). I have developed a pretty strong resistance to anything spiritual, admitting that is my first step. I picked up a Carolyn Myss book off my shelf last night but now I need to get back to school work.

  3. Sounds a bit like Fibromyalgia to me. I have it and had a major attack of it when I was 20 years old. I couldn’t sleep (but was really tired), was in constant pain, and wasn’t eating.I have pictures of myself from back then and I look like I’m on deaths door. It’s worth getting checked out for. They put me on Vicodin – it was that bad! After that week, I didn’t want to be on meds anymore. I wanted to find a more natural way. What’s helped me over the last 19 years is making sure I keep my stress level low, get plenty of sleep, and, although it sounds counterintuitive, plenty of exercise. All of this is to say that if it is Fibromyalgia, it’s not a death sentence for your life. You can get back to full mobility if you have it. Even if it’s something else, there are natural ways to move through them, but first you have to know what it is.

    Please take care of yourself. Wallace needs you! šŸ™‚

  4. I’m hoping that replying will let me approve your comment and then I can read it all and give a real response. The app is being ornery.

  5. I do suspect fibromyalgia as one possibility. I have celiac disease, chronic Epstein Barr, and migraines. Sometime during pregnancy, I developed a malar rash on my face, it comes and goes in intensity. I am also chemically sensitive and likely have a candida overgrowth (I recently did a cleanse for it but then got really sick and needed antibiocs). If I don’t eat dairy, my pain is typically less. My migraines are better with magnesium and I’ve added in malic acid as that’s supposed to be helpful for fibromyalgia. This is the least active I’ve been in my life but last winter when we lived in chicago and I bike and walked everywhere and babywore all the time, I was also in a ton of pain. Thank you for letting me know that you’ve been able to manage this without medication. I really don’t want to end up on them as I was on daily medicine for my migraines from 11 to 18.

  6. kayrosey says:

    Sounds like an autoimmune thing, RA is the first thing that came to mind. I would go back for some testing!

  7. I am so, so sorry you are struggling with this. I spent over a year of my life in high school with a chronic fatigue (non) diagnosis before I found a clinic that was able to diagnose my gut issues and get them fixed. It is a horrible feeling to be written off as a hypochondriac or to be told it isn’t something that can be fixed. And it feels impossible to sort through the medical professionals who can actually help vs. the ones who are pedaling false hopes – whether they are practicing western or other forms.
    I hope you’re able to get the help you need. The Pacific NW is a hub for things like Celiac and lupus, so there is a lot of support for folks with autoimmune issues here.

  8. I know that was one of the things the doctor 2 years ago tested for. From the results I was told, the preliminary test was in the high range. The dr said it was fine though and i couldnt get them to tell me what ranges they were using.

  9. Wow, you’ve got a lot going on! Yes, there is hope for Fibro without meds if that’s what you have. I’ve also learned to deal with a certain amount of pain over the years, so now it’s mostly mild discomfort if someone grabs my arm or something. Unless I am having a flare, then I hurt all over for no reason. That hasn’t happened in a really long time, though! Stress is definitely a huge trigger for Fibro.

  10. kayrosey says:

    I’d see if you can get tested again, see if anything has changed.
    This is the website I use to look stuff up at school, and some hospitals use it too: https://labtestsonline.org/

  11. What were your underlying gut issues? I have a definite dairy connection but not eating it doesn’t seem to be the full answer. It took a lot of doctors blowing me off before I discovered I have celiac and gave up on them. I had a internal medicine dr tell me I was making things up and a GI tell me I was anorexic.

  12. That’s one of the things I’m hoping I can get tested for. The challenge is having the time to get to a dr. I also have to bring Wallace with me as I really don’t have someone to watch him. My urgent care visit went pretty well with him until the end.

  13. I had a candida problem, stemming from overuse of antibiotics when I was little for chronic ear infections. I ended up on a special diet and a ton of supplements for about 9 months to rebuild the lining of my gut. As long as a limit sugar, I don’t have any issues. I can tell when I have to back off because I’ll get severely lethargic. Dairy is also a problem for me, but cultured is better than uncultured.

    My incorrect diagnoses included anorexia and depression. They even went so far as to send me to a therapist, who was, unfortunately for everyone, not very smart.

  14. Were you able to figure out any underlying issues going on? Just typing on my phone hurts my hands and wrists today. I have my school book in front of me and the kids eating PB&J.

  15. Candida is one of my factors. I was given way too many of them as a kid. I had just done a cleanse with Candex and had two weeks of intense die-off even after two years of probiotics. I knew my immune system was failing me when I was sick because I also got a yeast infection in my belly button. I didn’t know that was a thing but it clearly is. So the abx helped me with one infection and it seems the viral is gone. I’m going hard with probiotics again and I’m supposed to start making bone broth per my ND. Issue is I seem to react to beef so I can’t just get a grass fed beef gelatin and use that to help rebuild my gut. I’m currently on magnesium, malic acid, probiotics, olive leaf extract, and Chinese herbs for liver support.

  16. Mel says:

    That is so hard, especially when you have people dependent upon you. Have you ever been tested for Lyme? It sounds similar to a friend who never got tested for that because she was rarely if ever in the woods. She was finally tested years later and tested positive. She has no memory of a tick bite, but it sounds very similar to your symptoms. Total assvice, I know, but if you haven’t been tested, it would be worth exploring.

  17. Assvice, hahahaha! I have had a few people mention Lyme disease to me. I also have no memory of ever getting bit by a tick or even knowing what they were until I was an adult. This all started after my son was born. We did go camping twice before my symptoms started, but it was at a music festival. I will add it to my short list because it does match up to my symptoms in ways.

  18. AndiePants says:

    I’m SO sorry. RA popped into my mind – do you have joint swelling as well? I have a family history of RA, and get swelling in the joints of ym fingers (having a flare up right now) and it definitely runs with outher AI diseases like celiac. I’d agree another test would be recommended!

  19. AI are like a collect-them-all game! Once you get one, you get more. I once met someone with RA, lupus, Cd, and Hashimoto. I don’t think I have any noticeable swelling right now. My short list is RA, fibromyalgia, lyme disease, and other AI.

  20. Traci York says:

    A couple of years ago, I was positive I’d developed RA – I walked around here like a 90 year old woman. Long story short, my blood test revealed extremely low Iron and Vitamin D (like, the doc said with my number, back in the day they’d transfuse me right there). Since I took both supplements religiously, I was surprised – she put me on higher doses of each, and in about three months, I started to feel human again. Soon after, I realized I needed a hysterectomy, or I wouldn’t be able to keep my Iron levels up. I hope you can find the cause, and the treatment is quick and effective. Sending lots of positive thoughts your way.

  21. That doesn’t sound like fun. I will be sure to get a CBC done too. I took tylenol with codeine twice last night so I could sleep. I think it did take my pain down a notch but will be worn off any minute now.

  22. For me, the underlying issue was my sexuality. I have always been an anxious and at times depressed person. I was trying to be someone I am not to please other people. My Fibro flared right after I made myself have sex with my long term on again/off again boyfriend. It was my first and only time with a man. I knew deep inside it wasn’t who I was and the Fibro brought that all out. Obviously you are not in the same situation, but if you think really hard, maybe you can see a mental connection? Are you blocking something? Are you doing something you don’t want to do? I don’t know, I’m not a doctor. But I do know I was in a lot of pain and basically being told nothing was wrong with me, so I can relate!

  23. I live with my dad again and I am hating every minute of it. He won’t even talk to me about basic things. He won’t contribute to anything around the house. He acts like every interaction with us is a hindrance or not worth his attention/time. It wasn’t like this before when my pain started but I was dealing with a lot of stress then with wallace’s medical issues and I was very alone. I do have a lot of stress right now in my life but in order to get out of this living situation I have a lot of work to do. We move by the end of June but I have classes to finish, my babysitting job, and a RV to repair. Then there is a truck to buy and learn to drive and not a steady flow of money due to both my parents refusing to cosign a private student loan for me. Yup. Stress and emotions are for sure a factor.

  24. I started reading “why people don’t heal and how they can” by Caroline Myss. I think the trauma of Wallace having been FTT and two doctors reporting me to CPS is my big trauma that I keep retelling and holding onto.

  25. Sounds like you have a lot on your plate. I know it’s a while away, but I bet you start feeling better once you move. For now, maybe some meditation will help?

  26. Yeh I need to make myself meditate. I try to get a handful of yoga poses in a couple times a day but it isn’t relaxing with Wallace in my face.

  27. I can really relate; that’s a hard place to be at. I won’t offer a bunch of unsolicited advice, but I will say this: treating pain, regardless of how you do it, is at least as important as understanding what causes it. Your brain rewires itself so that the longer you have chronic pain, the more resistant it is to treatment. I have multiple autoimmune diseases as well as fibromyalgia, and was in severe pain for quite some time. I wish I hadn’t been so resistant to taking medication at first; it made a huge difference for me. I still have chronic pain, but it is better and I am coping better as well. If you want to talk about it at all, feel free to email me.

  28. Thank you, I really appreciafe your support! I got an appointment but it isn’t until 03/28.

  29. Sarah says:

    Just wanted to send some support and love to you. I’m sorry you’re struggling with this, and I hope you find some healing answers to help you live a happier, less painful life. Feeling like every day is a battle can wear one down so quickly.

    I thought that Epstein Barr *was* fibromyalgia, so, not knowing they’re two separate things makes me feel like I probably don’t know enough to offer anything. Your body is really dealing with so much! Any one of those issues is enough to wear most people down. Again, just sending love as much as one can thru a blog comment! ā¤

  30. Thank you for the support. I hadn’t heard about an EBV/fibromyalgia connection. From what I’ve read they don’t really know what causes fibromyalgia. Most people get EBV/mono once and then always have the antibodies. A lucky 5% get a chronic infection that flares up. I’ve had it diagnosed active 3 times but haven’t been tested for it in a long time. I did have an interesting conversation in my RV group that might have lead to part of what is going on. It’s called SIBO (small intestine bacteria overgrowth) and can go along with candida.

  31. Sarah says:

    My sister has had mono 3-4 times over the course of her life. Both her and my older brother got it twice as children, but I somehow dodged it. I had no idea of the EBV/mono connection. I’ll have to see if she does, just for her info. My aunt has really struggled with what I’m pretty sure I was told was fibromyalgia, and she’s been on a really strict anti-candida diet for some time, which really does seem to be helping. She’s found she has to stick with that diet to be able to function normally / regularly. I’ll have to ask my mom what she was talking about – maybe I’m remembering it wrong or maybe it’s an old idea that has since changed. I’m basing the EBV/fibromyalgia connection on a conversation we had probably ten years ago about a friend of hers. She’s a nurse, fwiw, but that doesn’t necessarily mean anything, lol. And again, just hoping you find some answers.

  32. Sarah says:

    I forgot to say that while my aunt has both the fibromyalgia and the candida issues, I can’t say she considers them to be connected, necessarily, but her quality of life has really improved overall since she started the anti-Candida diet / cleanse.

  33. To make sure we aren’t confusing each other, EBV is the same thing as mono, just two different names. I definitely think there is an immune and gut connection to fibromyalgia. I am reading this right now (well, actually I am sewing and getting dressed) http://www.holistichelp.net/blog/sibo-101-a-comprehensive-guide-to-small-intestinal-bacterial-overgrowth/.

  34. At least she is feeling the good effects even if she isn’t convinced there is a correlation!

  35. Sarah says:

    Lol, there is nothing like leaving a comment to show me how I can talk in pointless circles sometimes! So just my turn to try to clarify – I don’t know if my aunt thinks her candida issues are directly causing her fibromyalgia, simply bc I’ve never had that conversation with her – she may see both problems as being separate concerns in her body, idk. (Is anything in our bodies ever really separate? Probably not.) But she for sure thinks the anti candida diet is helping *everything*.

    And I need to talk to my mom and sister about the EBV/mono reality, vs what I’m sure my mom told me about EBV/fibromyalgia that is inaccurate. Thanks for the info!

  36. Ha! I get it. And no, nothing is ever separate in our bodies. I already knew that but this medical terminology class is really showing me how it is all intertwined.

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