I would like to ask some things of those who have felt, or feel now, that they have an undiagnosed or “phantom” disease. Let’s say your doctors are confounded, or are losing patience with you. Tests continue to come back normal. You feel anything but normal. Your family feels helpless, or worse, tells you to snap out of it. Your social life is going downhill because you won’t commit to plans, or cancel them at the last minute. You have one “good day” out of a week, or maybe two weeks.
Depression is one thing that I am very aware of, and have been treated for, and doctors have told me that physical symptoms can be coupled with this condition. If that is so, and chronic 24/7 pain and debilitating weakness can be attributed to it, then I would say it is the worst thing that has ever visited this old guy.
I know, from reading some of your accounts, that sometimes the desperation is so great, we feel like throwing in the towel. I have even followed people on WordPress that seemed to me as if they were going to do something desperate. That’s when I realize I’m not there yet, and I try to keep them talking and check in with them frequently.
How do you stay afloat?
What has the medicine man told you?
Is your family supportive, or do you have any community support?
What’s your percentage of “good days”?
Do you feel as if you’re being punished for something?
So many more things I could ask, but that’s good for starters.
I appreciate your reading.
Lee
Aremyfeetofftheground 
I’ve been through something similar, although in my case I was very very lucky. It was my primary care doc who said “I’ve tested you for everything there is. The good news is you don’t have Lupus, Lyme, MS…..” He then told me that we were going on the assumption that it is fibromyalgia. Medication (Cymbalta) and awareness of how to manage flare ups has totally changed my life. Have you tried any of the fibromyalgia meds?
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Years ago I was given Cymbalta, but stopped it because of severe insomnia and brain fog. It was the first med I was ever given, and it awash prescribed for depression. I suppose I didn’t give it a chance, but I was scared by the side effects.
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I have to say that I also felt the brain fog at first. I didn’t have insomnia from it that I know of, but insomnia is a big part of my fibromyalgia. I now chase my Cymbalta with cannabis butter and I sleep very well and very painlessly! Wishing you some answers, and a chance to feel better!
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Thank you for your helpful reply!
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May I know how long you took the cymbalta and have you ever withdrawn from it?
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I’ve been taking it for about 3 years. One down side is that I first took 30 mg, but after six months it lost its effectiveness. Then it was upped to 60. Again, after about 6-9 months it wasn’t working. I’m at 90 mg now and it seems to be holding. I haven’t gone off of it, but I know that can be a really tough thing to do.
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I should say that for the past two months, I’ve been in complete withdrawal from five years of Imovane use.
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I’m so sorry! Feeling good is so taken for granted.
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I understand withdrawing from something is brutal, and can take time. Do you think it might be exacerbating your issues?
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I do, because our clinical pharmacist says it can take a couple of months, or longer, to be free of its effects.
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❤️
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I’m sorry you’re going through such a rough time Lee. After suffering from migraines since childhood, I’ve also been diagnosed with fibromyalgia, neuropathy, IBS, and Sjogren’s Syndrome. Getting these diagnoses took years and as a result I had to go on disability leaving my 26 year career as a children’s librarian which devastated me. Everyone who I thought were friends deserted me and for awhile I was in a very dark place. What saved me was blogging and the wonderful people I’ve met here online. While I still have more pain-filled days than not, and I battle depression and anxiety, I know things could be much worse.
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Thank you for your feeling reply.
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I don’t think I quite answered all of your questions and I’m sorry. I’ve had a migraine all day and my head is pretty muddled from medications. I wanted to answer you as best I could though.
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I know all about muddled, and appreciate your efforts all the more. Thank you.
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I have personally never had any kind of formal diagnosis, Lee. I suffer from all of those symptoms myself and I find a great reticence over comes me when I have to make any plans. I am getting a far deeper insight in my condition that a lot of my defences and symptoms are grief related and also related to loss. i feel reiticent to connect as I am never sure how deeply I will be able to connect with others, will i be judged treated kindly or meanly.. be told to ‘snap out of it’ and then get triggered to feel angrier and sadder.
I know so many of us suffer like this and my personal feeling is that so many things happen that affect us emotionally but we dont understandt that and so the body carries it in our cells in whatever way it can or does. It keeps us awake or we have terror over falling to sleep. then its hard to wake up and trust the new day with ‘a shadow hanging over me (us)’ as in the lyrics of that lovely song you headed your blog with.
I am sorry this isnt answering all your questions in order but its my two cents worth. Doctors cant find anything because a lof of our feelings are bodily expressed but the medical profession doesnt often recognise that and I feel a lot of psychiatrists out there also dont understand.
Love Deborah
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Thank you for this, Deborah.❤️
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❤ Its just one perspective.
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