Complaining Because I am PO'd

Posted by krisjb1 @krisjb1, Apr 4, 2023

It isn't like I don't have good days where I can walk and talk and appear normal. But, the bad times are always waiting in the background. When I really consider the state of my health from birth to my upcoming demise (76 yo) it has been one long pain. First there was colic. Then there was a major burn. Then a broken collar bone. Then strep throat over and over until I had my tonsils removed. Then teeth issues that lead to removals. All this before the age of 5. Then from teenage through adult years severe pain and blood loss that left me anemic without being reasonably able to bring my hemoglobin to normal until menopause. In the interim between my teen years and menopause I had a breech birth that came close to ending my life, was diagnosed with Hasimoto's thryroiditis, and then caught Lyme Disease. I have sleep apnea and use a machine at night. Throughout the years dr visits caused more harm than good far too many times. One of my shoulders is lower than the other because the dr. who set my broken collar bone did a poor job of it. He bandaged me so tightly that my blood supply was cut off and I almost lost that arm. My low iron levels were not addressed. I wanted a wheelchair as a gift because I was too fatigued to walk. Chiropractic and acupuncture haven't done much good either. I went to a pain clinic because I have severe headaches, my cervical spine is disintegrating, and sometimes need a cane because one knee or the other or both hurt too much to walk or climb stairs. Pain medication was refused unless I would agree to a brain MRI. I have tinnitus. Afraid to get the MRI because I couldn't bear to make it worse. This morning I couldn't bend over and I am sitting with a heat pack on my back. I have a headache and feel dizzy. My closet is full of healthcare items: special pillows, heat packs, cold packs, analgesics, an oxygen generator, braces for my back, knees, wrists, elastic bandages, electric stimulation machines, neck traction devices-you name it, I probably have it. I am tired of this whole thing. I look pretty good for my age. I wish I could feel as healthy as I look. Sometimes you just cannot tell by looking at a person how much pain they are in, can you?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

You have certainly been through the wringer! I have MCTD, and my best advice is to get PT from a manual style person. Yoga/isometrics/pilates have done wonders to relax, loosen and strengthen muscles around degenerating joints, some of which slip out of place. I've tried the shots, but in comparison to the movements I've learned, the movement wins. Meds and the shots work in combination with activity, but alone never do the job. Like you, I have ice/heat packs, lidocaine patches, KT tape (you tube directions) to rest areas, CBD ointment, biofreeze, magnesium spray and it gets even more peculiar from there. The best bed for me is a spring type, with a 3lb density, 3" thick. You might check into MRI side effects; the only one I had really was trying to adjust my breathing to the drum beats of the machine, and they can give you valium. I was there after concussion.

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@californiazebra

@krisjb1 -- sorry to hear you have been blasted with medical issues your whole life. I, and a lot of people on these message boards, also have been. You are correct that when people can't see what you're feeling, it's even more frustrating. I empathize with you.

After reading your story, the only advice I can offer is about the brain MRI. I have had terrible tinnitus since I was 11 and shattered my eardrum. I'm 64 now and it's louder than ever in one ear, but feels like my whole head. I have had several brain MRIs over the years and none of them impacted my tinnitus. You do want to put in tight foam earplugs that they should supply because the banging in the machine is very loud and will bug you for a couple days if no earplugs. Like after you go to a overly loud concert. Wear ear plugs they supply to be safe, you'll be fine and will protect your hearing. Some places even provide headphones with music.

MRI tips. Not sure if you've ever had an MRI. Some people are claustrophobic in the tube. I don't love it, but I don't take an sedatives either. Mind over matter. The secret is to close your eyes before you go in and never open them once until you come out. Don't even peek. Then you won't get that closed in feeling. I've probably had a dozen MRIs. It works. Hope you get some relief soon.

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Tinnitus is at epidemic levels -- and so is electromagnetic -- oh, damn, I'm going to have to get off. So quickly -- please, please consider the effects of wifi overload.

It took me two years to find out and heal from tinnitus so terrible I considered checking out. But as soon as I put my cell phone far away and turned off all electricity before bed, computer off as well, the tinnitus began to recede and my 50 years of insomnia turned into deep sleep of many hours.

The communications industry really doesn't want you to know about the godawful effects of
electromagnetic overload. But there are many studies. Please, folks, consider this and experiment with it!

REPLY
@mayonina82

Tinnitus is at epidemic levels -- and so is electromagnetic -- oh, damn, I'm going to have to get off. So quickly -- please, please consider the effects of wifi overload.

It took me two years to find out and heal from tinnitus so terrible I considered checking out. But as soon as I put my cell phone far away and turned off all electricity before bed, computer off as well, the tinnitus began to recede and my 50 years of insomnia turned into deep sleep of many hours.

The communications industry really doesn't want you to know about the godawful effects of
electromagnetic overload. But there are many studies. Please, folks, consider this and experiment with it!

Jump to this post

@mayonina82 -- I have heard all electronics should be at least 6 feet away while sleeping. I'm curious about how your tinnitus first started or was it a mystery from the start? Mine started instantly from a shattered eardrum, but why it has become louder in the past 10 years is a mystery. My neurologist told me it tends to get louder over time.

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Sadly, all that is not uncommon, especially for a female patient.

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@krisjb1 I’m so sorry. My life story is similar. I think part of the problem is that we were born at a time when medical care was not what it is now. (1940’s)
I started out in an incubator for 10 days because I was drowning in my mother’s blood. She was hemorrhaging. Then it was ricketts because my stomach rejected the milk they fed me. On to many colds, tonsils were removed using ether for the anesthetic. I had every single childhood disease that was around. I had an ear drum burst from an infection. At 19 I had the dreaded mononucleosis that lasted 6 weeks.
I could go on, but I am trying to get my mind off my problems. My life now is rather quiet, I go out when I can, have my small family over once in a while.
I have a few new hobbies. I do this while struggling with fibromyalgia, osteoarthritis, and peripheral neuropathy.

We are blessed to be alive!

REPLY
@mayonina82

Tinnitus is at epidemic levels -- and so is electromagnetic -- oh, damn, I'm going to have to get off. So quickly -- please, please consider the effects of wifi overload.

It took me two years to find out and heal from tinnitus so terrible I considered checking out. But as soon as I put my cell phone far away and turned off all electricity before bed, computer off as well, the tinnitus began to recede and my 50 years of insomnia turned into deep sleep of many hours.

The communications industry really doesn't want you to know about the godawful effects of
electromagnetic overload. But there are many studies. Please, folks, consider this and experiment with it!

Jump to this post

It's more likely the tinnitus decreased because you were sleeping better and eliminating postural stress.

REPLY
@californiazebra

@mayonina82 -- I have heard all electronics should be at least 6 feet away while sleeping. I'm curious about how your tinnitus first started or was it a mystery from the start? Mine started instantly from a shattered eardrum, but why it has become louder in the past 10 years is a mystery. My neurologist told me it tends to get louder over time.

Jump to this post

Electro magnetic fields are dangerous to health but it is almost impossible to remove those fields unless one has relocated to a place that has no electricity and internet. There are some studies that attempt to refute this but considering that the funds to do the studies are from power companies and the rest of the profiteers I don't give them any attention. At one point I turned off my internet at night as it was just underneath my bed one floor below. I think I should go back to doing that but of course the issue is that all my internet based alarm system also goes down. As far as my tinnitus, I think it started because I went to dances as a teenager where the music was cranked up . It got worse this past year when I started to use an electric leaf blower without hearing protection. For some reason I wasn't aware of how loud it was. I also think that using a vacuum cleaner daily contributed to the issue. I have always had some balance and dizziness issues, (cannot do amusement park rides, etc.) so I think this is all connected to some genetic defect. If your neurologist told you that "time" is the factor that causes it to increase I would also guess that as age advances the circulatory system is not efficient so if there is repair for the problem dependent upon blood supply, maybe that is the root cause. I can't do anything now in any kind of noisy environment without ear plugs and muffs. The other day I was at a gas station and the delivery truck was backing up repeatedly to get into the right position. The beep, beep, beep, beep was loud. I couldn't get out to pump until I had put on my double layer of protection.

REPLY
@mayonina82

Tinnitus is at epidemic levels -- and so is electromagnetic -- oh, damn, I'm going to have to get off. So quickly -- please, please consider the effects of wifi overload.

It took me two years to find out and heal from tinnitus so terrible I considered checking out. But as soon as I put my cell phone far away and turned off all electricity before bed, computer off as well, the tinnitus began to recede and my 50 years of insomnia turned into deep sleep of many hours.

The communications industry really doesn't want you to know about the godawful effects of
electromagnetic overload. But there are many studies. Please, folks, consider this and experiment with it!

Jump to this post

I agree 100%. Too much money has been invested to turn back for something so trivial as public health!
Isn't it interesting that we are now forced to accept these fields. I told the power company I didn't want their smart meter but they installed it anyway. I would prefer to hard wire my computer but there are no receptacles in my office space. Even supposed landline phones are not landline, so what's the point of adding one. We are already using mobile phones close to our heads and strapped to our bodies so why add another radiation source? Is there a point to all this electro magnetic carcinogenic stuff that we favor because it supposedly has improved our lives? Like those girls who painted the radium dials of clocks and watches who had no idea they were killing themselves we are also unaware of how much danger we are in.

REPLY
@SusanEllen66

@krisjb1 I’m so sorry. My life story is similar. I think part of the problem is that we were born at a time when medical care was not what it is now. (1940’s)
I started out in an incubator for 10 days because I was drowning in my mother’s blood. She was hemorrhaging. Then it was ricketts because my stomach rejected the milk they fed me. On to many colds, tonsils were removed using ether for the anesthetic. I had every single childhood disease that was around. I had an ear drum burst from an infection. At 19 I had the dreaded mononucleosis that lasted 6 weeks.
I could go on, but I am trying to get my mind off my problems. My life now is rather quiet, I go out when I can, have my small family over once in a while.
I have a few new hobbies. I do this while struggling with fibromyalgia, osteoarthritis, and peripheral neuropathy.

We are blessed to be alive!

Jump to this post

Yup, I remember those childhood diseases. I had every one including mumps twice. As far as the ether anesthesia, that was a horror trip I remember to this day. As far as medical science is concerned-I am happy I did not get polio because as you know we were the first to be introduced to the vaccine. My uncle who preceded our generation was not so lucky and polio caused him to be permanently crippled. My aunt died as a teenager from a burst appendix. So, one thing is for sure, many advances in care have produced better outcomes. I wish I could say the same for issues like fibro and osteo, and peripheral neuropathy. They are descriptions of your problem but have no actual basis in causation-yet to be discovered before effective treatments are available. Have you tried pentoxyfillene for peripheral neuropathy? I used it for a while for kidney disease and for the neuropathy. I think it worked.

REPLY
@marye2

You have certainly been through the wringer! I have MCTD, and my best advice is to get PT from a manual style person. Yoga/isometrics/pilates have done wonders to relax, loosen and strengthen muscles around degenerating joints, some of which slip out of place. I've tried the shots, but in comparison to the movements I've learned, the movement wins. Meds and the shots work in combination with activity, but alone never do the job. Like you, I have ice/heat packs, lidocaine patches, KT tape (you tube directions) to rest areas, CBD ointment, biofreeze, magnesium spray and it gets even more peculiar from there. The best bed for me is a spring type, with a 3lb density, 3" thick. You might check into MRI side effects; the only one I had really was trying to adjust my breathing to the drum beats of the machine, and they can give you valium. I was there after concussion.

Jump to this post

In a way it is is almost amusing to note how many "pain relief" items we have to keep in our armament! I also have the lidocaine, and CBD drops. I made the mag spray and also highly recommend DMSO. Some people can't get over the taste that they get when DMSO enters the bloodstream. Lately I haven't tasted it and I don't know why. Sometimes I do and sometimes I don't. I have an adjustable foam bed which is good . I don't know what a manual style person is. I did try PT once but it did nothing for me that I wasn't able to do on my own. He had me pedaling a bike for far too long and I came out of that session worse than I was when I went in and had to recover for days. Nope. I guess I would have to find the right person but don't know how. I am OK with MRI's. Just can't endure the noise and the possibility of making tinnitus worse.

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