Posts Tagged ‘Doctor’

My Name is Fibromyalgia

May 2, 2023

From Chronic Pain Life Facebook group

MY NAME IS FIBROMYALGIA

Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.

I’m rolling on the floor, laughing. Just try.

You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️

Cognative Issues, Test Results

September 9, 2022

Bloodwork:

Thee tests I had done were all negative, except that my hypothyroidism medication was at too high a level because of my weight loss.. So that’s been reduced

COGNITIVE IMPAIRMENTS TEXTING

The testing, imo was inconclusive. His word memory test was too easy to remember.. Dog. Tree. Ball. They’re related. Dog pees on tree, dog plays with ball. The shape he had me draw was a symmetrical pattern over lapping itself. With my math background that kinda thing is easy & not sure how it impacts my memory

NEXT STEPS:

So the meds are changed with a follow-up in three months.. if there’s no improvement, I’ll explain why I thought the test was inconclusive & request a redo

“STOP” – Doctor’s Orders

August 20, 2021

So I was camping on the weekend with a gentleman friend and one night our mattress deflated so needless to say I didn’t get a good night’s sleep that night. As a result pain levels are up. But pain levels were also up a week prior and the week prior to that.

As many of you know I am a cub scout leader. Between my two groups I have six senior Cubs, called Howlers, who are going up to Scouts in September. Five of these boys are getting the Cub top section award..

2 months ago, when we finally got permission to Camp hello I suggested to Raksha that would take all the senior Cubs and take them on a camp, teaching them how to do a scout camp. Well Raksha is also currently a scout leader, but she has not done a scout section camp because of restrictions due to covid. But I have several years of troop level camping under my belt so I know what they should and should not be doing…

On of my Howler at day camp a few weeks back.

About a month ago, the Scouts and venturers expressed an interest in camping so I’m not sure how it happened but suddenly my howler Camp became a Howler / Scout / Vent camp. While I was annoyed about it kind of getting taken over from the original intent I figured that the existing older Scouts can teach the Howlers how to Camp as Scouts..

i was actually looking forward to camping with the kids.

What does one have to do with my doctor? Everything.

When my pain was creeping up, I wasn’t doing anything to rest. After spiking again last weekend, I had an appointment with my pain physician, a regularly scheduled appointment. She reviewed my comments & my paperwork and we had a discussion She said that I was overdoing it & if I kept pushing I was going to significantly hurt myself, possibly slamming right out of my semi-remission. So, she said “No, you are not to go camping”.

Well, she was right.. I kept my activity level up to help finish prepping for camp.. & today, I’m done.

I could not even help shift a canoe last night. Not lift, just shift. & Today I woke in active fibromyalgia pain. My leggs were killing me.

No! Stop!! Do not Camp. Do not pass Go. Do not collect $200

So my Doctor said no, & I’m glad she did!

It Finally Happened Again

August 13, 2021

So on Friday or late Thursday my sciatica flared up, because of my osteoarthritis… And with Cub camp on Saturday there is no way I would have been able to function.

So I went to the ER, the first time since covid started, and possibly even the first time in 2 years…

Previously when I went to Lakeridge health Oshawa I was expecting compassion, respect and dignity. I’m sure if you go back far enough you will see posts of getting policy changed in the Scarborough hospitals.

On Friday the first thing the doctor said to me was “So I hear you can’t afford Toradol?”” well that’s professional. He agrees to give me some Toradol after I saw I don’t want narcotics.. Toradol in an anti-inflammatory..

Every other time I’ve gone to the emergency department in the hospital, but Centenary, Scarborough Gen, or Lakeridge Health Oshawa I have been given an injection of 30 mg of Toradol. Frequently I am also given another 30 mg tablet to take it home later. And occasionally the doctors do offer me a muscle relaxer as well

All I got on Friday for a chronic pain flare bad enough for me to drag my ass to an emergency department in a pandemic was 10mg of Toradol. There is absolutely no way that someone with chronic pain, specifically in a flare with pain spiking, the 10 f****** mg of Toradol is going to do anything.

The one thing it did, was put me in tears.

I ended overdosing on naproxen at home just to get enough relief so that I could work with my Cub Scouts the next day.


Before some dough head makes a comment about me being a Scouter while having chronic pain. If I didn’t do anything because I had pain I wouldn’t be doing anything at all – I’d be a freaking hermit. And I’m very much enjoy working with the kids to allow that.

And before someone else says let somebody else run the meeting, I was the Scouter in Charge on Saturday. I was the one who actually knew exactly what we were doing, leading several of the activities & the only one familiar enough with the area to run a hike… I am also the one who, if something happened, I would be the one responsible whether I was there or not. So your damn straight I’m going to make it up to the day.

Ongoing Holiday Crash

January 9, 2021

Most of the time when I have a crash in the holidays I end up in the hospital because of how bad the pain can get.. I usually manage for a few days at a level 7 or 8 out of 10 and after that, I’m in the ER.

This year, while the pain has been up, it hasn’t spiked to that level yet. And I hope it doesn’t. But unfortunately I have been in less higher level since the 26th of December – so, 17 days days now, which is unusual, for me… A severely sucks..

But I called my pain physician in Scarborough for an appointment on Monday & see my other pain doctor Tuesday. . With pain levels at a 5 or 6, I can deal, but only to a point.. after more than 2 weeks, I’ve hit that point..

Wish me luck!

Chronic Illness Bingo leads to Acceptance

July 27, 2020

This is kinda like the get to know style of bingo, but it’s just for you. Check off what applies to you.

I originally just posted this on my regular social media, but choose to write about here.. The reason I do is the reaction of a friend of mine, Susan.

Late last year she was diagnosed with Rheumatoid Arthritis. Now, she has been struggling with acceptance that her life he’s been permanently altered through no fault of her own. Recently she say the post on my social media of my bingo card (see below) & noticed that she checked the few spaces I had empty. She then got curious & looked at the rest of the card noticing that she actually checked a majority of the boxes aswell.

This was her “Ah-ha” type moment. And realized “I have a chronic illness.” I think this realization, and acceptance of the hard truth has actually be a relief for her. She’s realized that there are limits and she has to learn where her limits are. But she’s no longer stuck and is able to move forward.

While I’m not happy that my post gobsmacked her in the face with the truth, I am glad she’s got the acceptance and is moving forward.


See where my 3 bingo lines are. How full isUis your card? I know someone who actually checks each box. 😦

About Fibro (Pt II)

June 30, 2020

This is a long read, but if you haven’t ever seen/read it, then it is most def worth the time. Because of it’s length, I’ve made it 2 posts. Fell free to use it for your own use if you so desire.

About Fibromyalgia

Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
The difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!”. I am not better, I am sounding happy. If you want to comment on that, you’re welcome.
Being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
Repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what FMS does to you. – Please understand that FMS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
“Getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously FMS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
If I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS does not forgive. – If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and maybe discuss it with my doctor.

In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the the doctor, or to the physical therapist. I need you on a different level too . You’re my link to the outside world… if you don’t come to visit me then I might not get to see you. … and, as much as it’s possible, I need you to understand me.

A Pain Doc Who Gets It!

January 21, 2012

As some of ya’ll know & some don’t, I’ve been visiting the ER more than usual. In a period of about 6 weeks, I was in the ER *Five Times* due to pain flares of my fibromyalgia. Each visit they gave me demerol, but occasionally torodol. I have since gotten an emergency appointment with my fibro/pain management doctor. He told that torodol is an anti-inflammatory & wouldn’t work on fibro cuz it is not an inflammatory condition; I knew that, but it will help cfs inflammation. He also told me that demerol is an anesthetic, not a pain reliever that can treat the pain. This I did not know. He also told me that demerol could also be detrimental to my health and that if I do find myself in the ER, I should get morphine. Finally, he said that regular use of Tylenol 3’s is also detrimental to my health. He stated that ER docs should know all that. He did quite a few things for me. He administered local anesthesia to my lower back to help temporarily block the nerve receptors from registering pain for a few hours until I was able to obtain the rest of the medication. He gave me a prescription for the Fentanyl patch 25mcg/h. One patch lasts about 72 hours. This medication works with the pain centre in the brain. He also gave me percocet, but no more that 3/day. This is for breakthrough pain from the fentanyl patch. A change was also made from lyrica to gabapentin. They are apparently sibling medications, but the gabapentin is covered by my plan, lyrica isn’t.

 

OMG! A pain doctor who actually gets it and treats it!

Mtl Pain Researcher Joins Medical Hall of Fame

June 15, 2009

Montreal Pain Researcher Joins Canadian Medical Hall of Fame

By Martin C. Barry

Dr. Ronald Melzack’s interest in studying pain started off as a scientific problem, much like studying vision or hearing. “It was just plain curiosity about pain,” he said about his recent induction into the Canadian Medical Hall of Fame.

It wasn’t until he was a postdoctoral fellow in medical school at the University of Oregon and “met all kinds of people in terrible pain that could not be treated” that the study of chronic pain became his lifelong passion.

Last month during a ceremony in Montreal, Melzack was inducted into this country’s medical hall of fame along with four other individuals recognized for winning their place in Canadian medical history. Located in London, Ont., the hall of fame is dedicated to honouring Canadians who have changed the world’s health care landscape.

“I’m thrilled,” Melzack said of becoming a member of the Hall of Fame that has honoured such medical pioneers as Banting and Best, known for their discovery of insulin. Melzack’s pioneering research into pain mechanisms and pain control spans more than a half century and has had a major impact on every field of medicine dealing with patients who suffer from pain, in particular chronic pain.

Ronald Melzack is “thrilled” with his induction into the medical hall of fame Photo: Martin C. Barry

Born in Montreal, Melzack first became interested in the connection between pain and environment at McGill when he studied the reactions of dogs to pain stimulus. For the first six months of their lives, one group of dogs was raised in kennels while the others were raised in homes with small children. The dogs who had no interaction with children reacted more to “being pinched.”

A leader and visionary in his field, Melzack made four major contributions in the field of pain.

With the support of Dr. Joseph Stratford, Melzack co-founded the first pain clinic in Canada known as the McGill University Montreal General Hospital Pain Center where he served as research director from 1974 to 2000. The clinic is known to be one of the best organized centres for pain treatment in the world.

In 1965, Melzack developed the gate-control theory of pain in collaboration with neurophysiologist Dr. Patrick Wall.

The theory produced an explosive growth in research and resulted in experimental and clinical psychology becoming an integral part of pain research and therapy. Then in 1968, Melzack published an extension of the gate theory, proposing that pain is a subjective, multidimensional experience produced by parallel neural networks.

Another breakthrough was the development in the mid-70s of the McGill Pain Questionnaire, now the most widely used method worldwide for measuring pain in clinical research. It was developed during Melzack’s postdoctoral years, when he recorded more than 100 words to describe pain. Then with the help of a statistician, he obtained quantitative measures for each descriptor.

His fascination with phantom limb pain led to the publication in 1989 of the “neuromatrix theor y of pain.” In it he proposes that we are born with a genetically determined neural network that generates the perception of the body, the sense of self, and can also generate chronic pain, even when no limbs are present.

The world’s knowledge of pain might be a different today if Melzack had chosen to pursue a different path. While working toward his postgraduate and doctoral degrees during the early 1950s, his brother, Louis, was establishing the foundations of the Classic Book Shops chain that would eventually become one of Canada’s leading retailers of paperbacks.

“They wanted me to go into the book business and I didn’t want to,” he said. “By this time I was really hooked on psychology. Louis thought an academic life was nice, but I would never really earn a living.”

That’s when Dr. Victor Goldbloom, who was then a young pediatrician and a regular customer at one of the book shops, advised the family that they should give the future Dr. Melzack their full support. Goldbloom remains in touch with him to this day.

Mrs. Hull, whom Melzack had met in the course of his postdoctoral research, was instrumental in developing the McGill Pain Questionnaire. A diabetic, she experienced phantom pain following the amputation of her legs. “She would get throbbing pain, burning pain, crushing, all these adjectives,” Melzack said. “And then I began to write down all these adjectives. And then other patients would use other adjectives – a variety of them.”

Pain researchers are getting a better understanding of a condition known as fibromyalgia, according to Melzack. “The stress system is highly involved in it,” he said. “We know that there are trigger points, sensitive areas in the body where you’re likely to find the same pattern in virtually everybody, which means that these muscles seem to be under some strange tension for reasons not known. It produces depression and is activated by depression. But now there’s so much more research on it and it’s become so prevalent.”

Source: http://theseniortimes.com