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Lack of diagnosis

Posted by george1969 @george1969, Nov 29, 2023

Sometimes it too much. Today is a hard day as most have been the past two months. I've had some 'mystery' illness for almost two decades. A doc several years ago suggested fibromyalgia because of the pain but that turned into a curse. When other physicians see fibro everything from then on has been 'it must just be the fibro' and they stopped looking. Crazy fluctuations in my ANA and C reactive proteins, pain, fatigue..those normal fibro things I guess but I kept getting worse and then last year I started having non epileptic seizures, then TIAs, my red blood cells plummeted, my platelets elevated and my health deteriorated quickly. Rheumatology, Gastro Endo, Primary Neuro, no help. Just the "sorry we can't give you answers, but if you feel worse let us know and we will look again" with the same round about over and over. Now something as simple as loading a dishwasher takes my breath away and the fatigue is unbearable. The spasms in my muscles and the pain in my head is too much. I feel like I'm dying but have no answers. Yet I tell myself that so many people have it so much worse than I but I'm drained.. physical and mentally. I guess my biggest question is how do you do it? How do you face the unknown or the sick every day and keep going? I hate complaining. I was raised to push through no matter what your obstacles yet I am struggling. I'm just....tired.

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covidstinks2023 | @covidstinks2023 | Nov 29, 2023

George1969, On my knees praying for you right now. God Bless You. I have a lot of your similar ailments. Everything pain wise and lungwise worsened after COVID last year. Have you had Covid? I have had Fibromyalgia for 28 years. It's a most misunderstood ailment. Pain everywhere, Fatigue, Headaches, IBS....etc. My Rheumatologist due to my numbers (just like you!) being elevated cannot give me a definite diagnosis of Lupus because they are not elevated enough. I will say this, with me Thyroid Diseases (I have both Thyroid Diseases) go along with Fibromyalgia and they also increase arthritis which I have also. Get your thyroid checked. I have had horrible headaches since being diagnosed with Fibromyalgia. I recommend you going to a pain clinic. To be honest, Flexeril 5 mg (I can only tolerate 1/2 of one/prescription) helps my muscle spasms from pain the best and keeps me from going on "high octane" pain meds. IF you can stand a massage, get one. It hurts, but, afterwards it helps get the knots out of your muscles. Have you tried a chiropractor? Find a good one....some can do you more harm than good. Voltaren gel (over the counter for arthritis 4 times a day), heat packs, Epsom salt soaks, helps if you can do this. Magnesium 200-400 mg tablets (over the counter) also helps with a lot of things...including Fibro. Get your B12 & D3 checked.....Both can cause pain & fatigue if they are low. Check with your doctor before doing these please. Sometimes you have to go through 2-3 doctors before you find one that will listen. The Lord gets me through this daily. Bless you....

REPLY
1 reply
george1969 | @george1969 | Nov 29, 2023
In reply to @covidstinks2023 "George1969, On my knees praying for you right now. God Bless You. I have a lot..." + (show)
@covidstinks2023

George1969, On my knees praying for you right now. God Bless You. I have a lot of your similar ailments. Everything pain wise and lungwise worsened after COVID last year. Have you had Covid? I have had Fibromyalgia for 28 years. It's a most misunderstood ailment. Pain everywhere, Fatigue, Headaches, IBS....etc. My Rheumatologist due to my numbers (just like you!) being elevated cannot give me a definite diagnosis of Lupus because they are not elevated enough. I will say this, with me Thyroid Diseases (I have both Thyroid Diseases) go along with Fibromyalgia and they also increase arthritis which I have also. Get your thyroid checked. I have had horrible headaches since being diagnosed with Fibromyalgia. I recommend you going to a pain clinic. To be honest, Flexeril 5 mg (I can only tolerate 1/2 of one/prescription) helps my muscle spasms from pain the best and keeps me from going on "high octane" pain meds. IF you can stand a massage, get one. It hurts, but, afterwards it helps get the knots out of your muscles. Have you tried a chiropractor? Find a good one....some can do you more harm than good. Voltaren gel (over the counter for arthritis 4 times a day), heat packs, Epsom salt soaks, helps if you can do this. Magnesium 200-400 mg tablets (over the counter) also helps with a lot of things...including Fibro. Get your B12 & D3 checked.....Both can cause pain & fatigue if they are low. Check with your doctor before doing these please. Sometimes you have to go through 2-3 doctors before you find one that will listen. The Lord gets me through this daily. Bless you....

Jump to this post

I have had by B and D checked and have to supplement both to keep my levels in check. Every doc I've been to for over 10 years have said that this looks like lupus but I don't have a specific marker. I do accupucture every other week and that gives the pain some relief for a few hours but we haven't been able to address other issues. Chiropractic has seemed to cause more inflammation than I would like but I haven't tried massage.. honestly I've been apprehensive. The weakness, especially so much in such a short amount of time has been the worst of it all. I would take the pain ten times over the fatigue and the worry of the next seizure. Sadly I've been through dozens of doctors. Partially due to changes in insurance and partially due to my location and limitations on quality physicians. I so appreciate, more than you know the prayers. My faith I think sometimes is the only thing I have to hold on to.

REPLY
1 reply
covidstinks2023 | @covidstinks2023 | Nov 29, 2023
In reply to @george1969 "I have had by B and D checked and have to supplement both to keep my..." + (show)
@george1969

I have had by B and D checked and have to supplement both to keep my levels in check. Every doc I've been to for over 10 years have said that this looks like lupus but I don't have a specific marker. I do accupucture every other week and that gives the pain some relief for a few hours but we haven't been able to address other issues. Chiropractic has seemed to cause more inflammation than I would like but I haven't tried massage.. honestly I've been apprehensive. The weakness, especially so much in such a short amount of time has been the worst of it all. I would take the pain ten times over the fatigue and the worry of the next seizure. Sadly I've been through dozens of doctors. Partially due to changes in insurance and partially due to my location and limitations on quality physicians. I so appreciate, more than you know the prayers. My faith I think sometimes is the only thing I have to hold on to.

Jump to this post

George1969, Bless you. IF you do decide to get a massage, DO NOT get a deep tissue massage. They have to go very gently with a fibro patient. My massage therapist rubs me down with the Voltaren Gel that I mentioned to you. The weakness and fatigue is very hard, I agree. Take a nap if you need to for a few minutes each day. It helps your body. Chiropractors can be a little to heavy handed and you have to find one that is gentle with your pain. I pray you get relief soon and answers.

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ralphysmom | @ralphysmom | Nov 30, 2023

Ive been 5 years with them not knowing what mine is but its neurological. It is frustrating but sometimes time will tell as the symptoms change or go away or new things come along that might make it more obvious. Im just throwing this out there but what about toxins in your environment? Hair samples. I wish you well and soon.

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barscr2 | @barscr2 | Dec 1, 2023

I’ve been sick since end of August, I relate , I feel like I’m going to pass away before they figure out what’s going on. I’m very tired.

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