1. < Chronic Pain

Feeling helpless

Posted by Chastity Lynn @sassylynn, Apr 6, 2022

Hello back in 2012 I started off with pain in my back n then my legs n then over time it’s gone to all my joints including my hands and now getting sharp pains in my head n facial numbness. I have had high platelets since 2015 535. I have had positive Ana as well . About 6 months found out had hyperthyroidism n several thyroid nodules. Last 3 months I’m barely able to walk , I get severe pain in my head ,numbness n numbness in the face . They say it’s the occipital nerve. Year ago my mri showing few flair hypertensives. I also suffer severe itching at times all over, I am losing my hair . My ferritin levels n cholesterol levels are very high as well.
I am 52 years old. I am tired of this pain tired of not getting answers . I’m losing time in life n with my grandchildren, I am suffering depression now due to this . I do not receive any pain Medication , I lay awake in tears half of the night . I woke one more couldn’t move right leg was ice cold n they tell me it’s a strain. I suffer from disc degenerative disease bin my neck as well C 3,4,5,6,7 n also in spine n lower back .. OA IN MY KNEES N MY FEET .. I feel I am not getting any answers on anything .. any suggestions Thank you

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theai | @theai | Apr 30, 2022
In reply to @sassylynn "Because I am recovering addict and my charts shows it .. been clean 14 years. But..." + (show)
@sassylynn

Because I am recovering addict and my charts shows it .. been clean 14 years. But my choice and I can’t suffer pain .. this why ppl turn to street drugs .
I was in very abusive relationship n also in 4 wheeler accident.

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just so you know, you are not alone. i call myself a recovering addict since 2005. but it is there on my charts whichever way i look. thank god for my pain doctor who gives me a pain medication that i don't abuse at all, and he gives me medical marijuana as well. that's besides all the shots, etc.

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Chastity Lynn | @sassylynn | May 2, 2022
In reply to @kenc "My own experience is that seeking the correct diagnosis is twisting maze of doctors and test...." + (show)
@kenc

My own experience is that seeking the correct diagnosis is twisting maze of doctors and test. However, have you seen a Hematologist?

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No I have not.. I’m actually gonna try get into the Mayo Clinic. Where I come from very little town ..country doctors .. old doctors ..

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judithjoy | @judithjoy | May 3, 2022
In reply to @sassylynn "Hello, yes feel misdiagnosed.. I have had postive ANA TESTING SINCE 2015 n platelets been up..." + (show)
@sassylynn

Hello, yes feel misdiagnosed.. I have had postive ANA TESTING SINCE 2015 n platelets been up since then .They keep getting higher . I get sores on my body n my mouth .. I believe it lupus ..but at the time of appointments I don’t have sign . My sister has it n fibromyalgia runs in. My family.Below I posted the sores I get . I feel as nobody listens .. even my neurologist don’t understand why the platelets so high n dr not doing nothing n my ferritin very high , overload of iron.

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So sorry about these problems. This is just a guess, but have you seen a dermatologist about these skin problems? Sometimes a dermatologist can diagnose a skin issue as being related to something more serious that is going on in your body.

The sores in your mouth may indicate that your system is too acidic, so you may want to avoid foods that are high in acid like citrus, lemons especially. And try to consume a diet that is high in alkaline foods.

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2 replies
jenatsky | @jenatsky | May 4, 2022
In reply to @senseiande "I have researched it as well as several dozen other things.. and do consider it a..." + (show)
@senseiande

I have researched it as well as several dozen other things.. and do consider it a distinct possibility. I think I stated that I am a weight lifter and martial arts enthusiast and have been since I was 15.. At my age (67) I still train high intensity and heavy weight and have not lost much in terms of strength sine I was 35 or so... That combined with spinal problems undoubedly can cause inflammation. I have just always felt that stopping training is a worse option than continuing and again at my age, once you stop it is really hard to get started and back up to where you were.. Hadn't thought of brachial plexopathy .. and if I am not mistaken autoimmune can play a role in that... I have suspected for at least a decade or so about autoimmune issues. but it seems all but impossible to get a docs attention particularly as an older individual. The problem with a ot of health issues I have had is that I simply do not look the part..perception becomes reality . hence most docs discount it .

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It would stand to reason from years of punishing training to your physical body will have a toll on you. As we ALL age our bodies breakdown and it seems to me you are experiencing some of these symptoms as you continue on your quest to stay ahead of the natural aging process. We are only able to do so much physically before we catch up to our physiologic selves, no matter how hard we try.

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marye2 | @marye2 | May 4, 2022
In reply to @sassylynn "Hello, yes feel misdiagnosed.. I have had postive ANA TESTING SINCE 2015 n platelets been up..." + (show)
@sassylynn

Hello, yes feel misdiagnosed.. I have had postive ANA TESTING SINCE 2015 n platelets been up since then .They keep getting higher . I get sores on my body n my mouth .. I believe it lupus ..but at the time of appointments I don’t have sign . My sister has it n fibromyalgia runs in. My family.Below I posted the sores I get . I feel as nobody listens .. even my neurologist don’t understand why the platelets so high n dr not doing nothing n my ferritin very high , overload of iron.

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You might get a biopsy by a dermatologist for diagnosis. Bring in your ANA blood work, as well.
For me the mouthsores are treatable by Miracle Mouthwash, an RX from your Dr. Mine came from a compounding pharmacy. The Lupus Handbook may also be useful. And, get to a Rheumatologist as this can be progressive.
You might ask your Dr about blood donations, as people use that for high iron levels. https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443#:~:text=Hereditary%20hemochromatosis%20(he%2Dmoe%2D,disease%2C%20heart%20problems%20and%20diabetes.

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Chastity Lynn | @sassylynn | May 8, 2022
In reply to @judithjoy "So sorry about these problems. This is just a guess, but have you seen a dermatologist..." + (show)
@judithjoy

So sorry about these problems. This is just a guess, but have you seen a dermatologist about these skin problems? Sometimes a dermatologist can diagnose a skin issue as being related to something more serious that is going on in your body.

The sores in your mouth may indicate that your system is too acidic, so you may want to avoid foods that are high in acid like citrus, lemons especially. And try to consume a diet that is high in alkaline foods.

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Yes they gave me a cream , but next time have break out I’m supposed go see them ASAP

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Bette J Wilson | @bjintn | May 8, 2022
In reply to @judithjoy "So sorry about these problems. This is just a guess, but have you seen a dermatologist..." + (show)
@judithjoy

So sorry about these problems. This is just a guess, but have you seen a dermatologist about these skin problems? Sometimes a dermatologist can diagnose a skin issue as being related to something more serious that is going on in your body.

The sores in your mouth may indicate that your system is too acidic, so you may want to avoid foods that are high in acid like citrus, lemons especially. And try to consume a diet that is high in alkaline foods.

Jump to this post

Yes, a twisted maze of doctors with a society of sick people that out numbers them; a plarethra of medications that cloud the issue with untold side effects; all we all want is to feel better and find rays of hope and beauty. How did I get so sick and what are the answers? Got to the root of my physical downward spiral with an extensive blood test by a hemotologist and he also consulted with another one to fill in the gaps of confusion. I now have a handle on my life. It isn't pretty but I know 'me' better! And been told it could be a 1 to 3 year wait for this little form of mine to just run out of strength...but my new doctors are right on and all is clearer in my space. I just try to keep my tank full and am thankful that my husband and two adult children want me around as long as possible. I'm loved and leave circles where doctors throw up their hands and charge my insurance when I walk out. My current doctors want the best for me and from me and I'll cooperate for the remainder of my 1 to 3 years. I sit right next to you on the bus or train or at the restaurant. I'm your fellow patient and want the best for us all. Digital hugs are the best we can offer each other and to listen with fellow feeling. If you recognize me by the tears falling down my cheeks as we pass on the street, a warm smile will go a long way.

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