Chronic Fatigue & Pain

There are a lot of different things we go through living with Lupus. Two of my more frequent “companions” are fatigue and different types of pain that travels through different parts of my body. Pain from debilitating headaches, various joint pains, nerve damage in both feet (which my previous Podiatrist adamantly insisted was NOT from Lupus), finger/ toe/ muscle cramps in all parts of my feet and legs, ferocious back pains, etc.

I don’t like to be asked questions about it or any other symptom I may be experiencing because it’s pretty much the same thing just a different day, I don’t want people to judge me or think that I’m complaining, or them trying to give me advice about what I SHOULD be doing (which is just their opinion & hasn’t helped yet), and don’t want to bore them to death. Sometimes I just wanted someone to listen, not try to “solve” my problems but it seems like they feel like it’s their duty to find a solution for me which my doctors haven’t figured out yet or maybe it’s just that they don’t know what to say. I would prefer just a hug.

I’ve tried to come up with the words to describe the pain and fatigue but have yet to find them to more accurately depict what I’m going through. Since coming across all of your blogs on WordPress, I have found something I really needed. To know that there are people who understand these symptoms in the context that only we can understand it as it all stems from Lupus. I understand that our experiences and degree of feeling any specific ailment is still different however it still means so much to me that people who understand are out there. In some posts that I have come across, I have found great definitions, analogies, and words to describe those things that I still cannot accurately put into words.

I was hoping that you could share the way that you describe the fatigue and pain and also any other symptoms that you experience. Any thoughts?

I wasn’t feeling the greatest today so canceled on my sister at first and in the morning had tried to explain to my mom how I felt. I finally decided to drag myself out of the house and see my sister since I can only see her on weekends and there’s no guarantee that I will feel any better next weekend. I found out from my sister that my mom thinks I’m having all of these pains and fatigue because of what she believes I’ve been eating lately. And plans to talk to me about it. Later after I left the house to drive to my sister’s, my mom was looking for me and text that she guessed that I left the house so I must be feeling better. What got to me was her tone. Lately it feels like everyday she is judging me or getting on my back about something. I can’t believe that even she is questioning how I feel and assuming that just because I was able to drive less than 10 miles away, that would mean that all of a sudden everything was perfect. I know it doesn’t sound like a big deal but my “touchiness” about this subject has a background that I wish didn’t exist.ย 



7 Comments (+add yours?)

  1. jessieefrost
    Apr 13, 2014 @ 17:35:48

    The best analogy can recommend, and one that seems to gt through to people well is the Spoon Theory.

    It was written by the sufferer of a chronic invisible illness, possibly even Lupus, n has become quite a quiet success.

    I hope this helps you, it is most effective when people red it at their own pace, rather than hav it verblly described to them.


  2. jessieefrost
    Apr 13, 2014 @ 18:29:40

    oops! it is about Lupus! Sorry! Try to create an open dialogue about everything you go through, it will take time for them to realise this won’t be going away. Maybe invite them to your appointments or write little daily notes about what happens and why so they can see your experiences from your POV?


  3. Lupus Adventurer
    Apr 14, 2014 @ 05:21:21

    Michelle, A couple of my descriptions… about the roving seemingly ever-present pain: deep bone ache, gnawing pain, deep brain ache, and intense joint pain… and about the fatigue, my favorites are bone-tired fatigue, overwhelming exhaustion, and for my neuropathy pain, burning nerve pain or “it feels like someone rubbed a brillo (steel wool) pad on the ends of all my nerves.” Have a great day, and keep smiling! LA


  4. nariel4thewest
    Apr 14, 2014 @ 11:09:17

    Well, generally… I feel like a dry piece of wood. Stiff and unyielding when I wake up. So the pain is kind of like when someone steps on you. Like you’re cracking (when you’re lucky) or the intensity can be like you got stomped on and you’re breaking apart in pieces. At least, that’s how I feel sometimes. I love reading your posts. Having been diagnosed just a month ago, I’m finding that I feel really alone alot with these feelings. I’m saying “I’m fine” alot and lying my ass off. You know?


    • mkingr
      Apr 14, 2014 @ 12:31:04

      I certainly know what you mean. I’m glad that you found these blogs before I did. I was in denial for a long time about my feelings and was just so fed up with no one understanding and blaming me for the disease or for my pain, fatigue, or whatever else was going on. This is a great place, I feel like I found a new world. ๐Ÿ™‚ I found a lot of great people here and if you ever have any questions, don’t hesitate to ask myself or anyone else. There are a lot of questions at first, I still have questions. Just try not to stress out too much, I have to tell myself that all the time. But stress is not good for your health so I hope you have your “happy place.” ๐Ÿ™‚ Today I found the words for my lower back/ pelvic pain. It felt like I was crushed by a vehicle or something. Two more weeks and I’m supposed to go back to work. I don’t feel ready yet I am so ready to just get back to my “normal” life. Take care and thank you for your input. ๐Ÿ™‚


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