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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@callalloo

The slam-down on painkillers for essentially all, because some rogue elements sell them, and another misuses them, is stunning governmental malfeasance in my opinion. I don't (currently) need any painkillers, but had I not had the security blanket of their availability after a back injury resulting in four herniated discs, life would have been very dark indeed. But they made physical therapy possible long enough to recover mobility and the opportunity to continue to improve via acupuncture and other efforts.

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So, true.. I wrote my Senator warning of all the unintended consequesnces of shuting everyone off for the high profile problems of some. I listed all the issues that would happen..i.e street drugs, alcohol abuse, suicide... I received a canned answer that was meant to justify what they had do to themselves. I knew then that my condition would never return me to my former health. and was in pain all the time.. I did what had killed others, I survived it.. and gradually over the years I used a self designed weight training and martial arts program to rehab without the help of the so called experts. Many of those that haven't and are out in the could now suffer from another medical and political failure. Over 100 thousand people have died in the last year due to fentanyl.. fentenyl that those same politicians refuse to stop from coming over an open border...It is absolutely disgraceful... It is not a ew phenomenum however it is one that is on steroids now... and is so unnecessary. Doctors spend years becoming doctors... They have the expertise to know who needs opiate and whose playing them... They also know thatr very often they don't have to take the patients word. In my case. there were eventually over a dozen MRI's of various kinds in the record.. The proof of my particular condition was right in front of them and they knew it. But because of politics putting pressure on the medical system.. they opted to do the wrong thing and scoop all patients up in the same basket... assumed liar even if the film proves otherwise.. I no longer use painkillers either, and haven't for 9 years... but , I ccould have very easily became a casuality because of blanket decisions and I know people who were.

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@senseiande

I can simpathize with everyone who is left feeling helpless. Sometimes the medical community doesn't follow up when they don't find quick answers. In my case i have several issues. It started with what was thought to be IBS after a trip to Southeast Asia. After a year of seeing doctors they came up with nothing. Then for the last 18 months I have had off and on pain in the right side of my shest near the breast bone that sometimes causes shoulder blade pain. I keep in faily good shape but at 67 it could be anything. It started as a pinching sensation..Then more like a sharp pain that is mildly worse with deep breathing. I am a serious weightlifter and I do smoke but have quit several times for months. The doc sent me to have a stress test and it showed very mild coronary artery disease. I don't know if the pain is related but I think not. I noticed that it sometimes gets worse when I smoke.. The symptoms started 18 months ago a few weeks after I started lifting weight again after a layoff. I also get shortness of breath , randomly and not necessarily due to activity. Like I have said I have been to the doctors several times with nothing new about possible causes. Also had been diagnosed with gerd 20 years ago but that hasn't seemed to be a problem lately.. So, yes..I feel helpless too.

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Do a bit of research around costochondritis and brachial plexopathy. Pain in those areas can mimic cardiac-related pain. Costochondritis can affect the xiphoid which can cause tension in the diaphragm area, which can cause GERD-like symptoms and shortness of breath.

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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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@senseiande

I can simpathize with everyone who is left feeling helpless. Sometimes the medical community doesn't follow up when they don't find quick answers. In my case i have several issues. It started with what was thought to be IBS after a trip to Southeast Asia. After a year of seeing doctors they came up with nothing. Then for the last 18 months I have had off and on pain in the right side of my shest near the breast bone that sometimes causes shoulder blade pain. I keep in faily good shape but at 67 it could be anything. It started as a pinching sensation..Then more like a sharp pain that is mildly worse with deep breathing. I am a serious weightlifter and I do smoke but have quit several times for months. The doc sent me to have a stress test and it showed very mild coronary artery disease. I don't know if the pain is related but I think not. I noticed that it sometimes gets worse when I smoke.. The symptoms started 18 months ago a few weeks after I started lifting weight again after a layoff. I also get shortness of breath , randomly and not necessarily due to activity. Like I have said I have been to the doctors several times with nothing new about possible causes. Also had been diagnosed with gerd 20 years ago but that hasn't seemed to be a problem lately.. So, yes..I feel helpless too.

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Ask them to do heart catherlizatiin, n sounds could be costochondritis in the chest . You get it from smoking , I use to get that n muscle swell in chest it’s very painful.i wish you the best

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@irr4et

Chastity,, why is it you take no pain medication? And what trauma has happened to your neck to cause that much Degenerative disk disease?

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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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Now my platelets are up to almost 600 thousand. I also suffer from Graves’ disease.

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@rwinney

H Chastity @sassylynn welcome to Connect, thank you for joining us. What leaves you feeling like there is no hope? Do you feel misdiagnosed? Do you feel there is more to it than doctors have presented? Do you feel like you have no pain management plan? Please fill me in on specifics so I or other members can offer help.

I'm also 52 with chronic pain. When I first came to Connect 3 years ago I was searching for answers. I went through real bad times of hopelessness and actually posted about my fear of not being able to be a good grandmother one day due to my conditions. Fear and uncertainty got the best of me. I understand where you are coming from.

I am here now to tell you that there is hope. I found it and I think you will too. Please know that positivity, as hard as it can be to find, has to be front and center in order to conquer.

I look forward to hearing back from you and for your answers to my earlier questions. Do you mind sharing more specifics so we can try to help?

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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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@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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Bless your heart! You are very wise indeed. And brave.

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@irr4et

Bless your heart! You are very wise indeed. And brave.

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Thank you ..

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@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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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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