View first: The Mystery of Chronic Pain
Donna’s Talk: A Student’s Experience Living with Fibromyalgia
Only after viewing both videos, please post your questions for Donna. Questions are due by the end of day, Thursday, April 14th, 2016.
PSY3405 HD32 "Critical" Health Psychology, Spring 2016
An Interdisciplinary Course on Race and Health
I did the reading, watched both videos, i was struggling to find a questions to ask, because in the second video, a lot of the questions that i wanted to ask were asked by the students and i did not want to ask the same question. however, I’m wondering what happened to Donna at the age of 10, she mentioned that she started having depression at that age, which makes me wonder what is the cause of her depression, which i believe is a direct link to her condition (Fibromyalgia). she mentioned that she was raised by her grandmother, and she is on her father’s medical coverage, so the only piece missing is her mother, so i wonder if she lost her mother at that age or something dramatic happened prior to her diagnosis?
Also, she mentioned she tried all three known drugs (Cymbalta, Lyrica and Savella) for Fibromyalgia, but have she tried Medical Marijuana? because i googled “most effective treatment for fibromyalgia” and i found an article online Posted on April 21, 2014, which shows how Medical Marijuana could be more effective than these 3 drugs:
http://nationalpainreport.com/marijuana-rated-most-effective-for-treating-fibromyalgia-8823638.html
“Medical marijuana is far more effective at treating symptoms of fibromyalgia than any of the three prescription drugs approved by the Food and Drug Administration to treat the disorder.
That is one of the surprise findings in an online survey of over 1,300 fibromyalgia patients conducted by the National Pain Foundation and National Pain Report.”
Hi Atif,
Thank you for watching my video and I can definitely answer your questions. My mother is alive, we just do not have a close relationship. I didn’t grow up with my parents I spent the past 14 years of my life in the Caribbean with my grandmother and other family members who are there. At age 10, a lot of my depression was based on the conflict my parents would have over me which had been going on since I was born. I was caught in the middle of it, unfortunately.
Also,
My therapist has mentioned medical marijuana to me and how it has helped other people. I just haven’t brought it up with my medical doctor as yet because I wanted to do more research on it. Thank you so much for sharing article with me I will definitely take a look at it.
I hope this answers your questions Atif
In the video, it was mentioned that “today is one of my good days”, does this mean that at times the medication does not work or not have its full strength each time.
What are your coping strategies to reduce the level of stress in your daily life such as when you are taking an exam and being overwhelmed with papers as you mentioned stress causes a flare up.
Whats your methods of transportation as at times the trains and buses can be very crowded, a lot of walking up and down stairs, standing, pushing and a lot of people are not willing to give up a seat especially since they can’t look at your exterior and know you have a illness.
Hi Karlvirn,
What I meant by “today is one of my good days” is my pain was manageable and not as bad as when I have a flare up. My medications have been working at times but it’s not effective when I have a flare up.
I have been taking my exams outside of the class room. I am part of the program for students with disabilities. This allows me to get extra time and do my exams outside of the class room which helps a lot. Also, I do try to watch my favorite shows whenever I am stressed to take my mind off things.
I do take the bus to come to school and sometimes I bare with it until I’m able to get a seat on the train. I have decided to learn how to drive so that way I won’t have to worry so much about not being able to seat while commuting
Hope this helps answer your questions!
Hello Donna
I know you said you do not have a lot of family support and Im sorry to hear that. My question is does anyone else in your family suffer from any of the same disorders that you do?
Thanks
Hi Julie,
I dont think anyone else does as far as i know, but sickle cell is a genetic disorder that runs in my family. I have a few cousins who are sick often because of it. I do have the trait of sick cell it does not make me sick , but as far as i know my dad has a few illnesses of his own but no one else besides me has fibromyalgia
Good Afternoon Donna,
The professor took the question I really wanted to ask you. Now, when you were younger or even at this moment, do you practice any table games to keep your mind occupy to not think about the pain? Also, the most important question, are you able to drink alcohol during holiday events? If so, do they alter the side effects of your medication drastically? Thank you and hopefully I get to meet you on the West Coast.
Hi Javier,
I use to play table games now i just play games on my phone lol but i do also watch my favorite shows often to keep my mind off my pain. I do drink but not as much as i use to before the medication. The only thing im able to drink without side effects is wine. Any other form of alcohol makes me have bad side effects while on medication.
I hope i answered your question and if i do see you in the west coast don’t be afraid to say hi
Short and sweet..
1) What do you do to keep your stress level low?
2) Have you tried any brain-training games to help you improve your memory?
3) Do you think in the future you will take the epidural injection?
Hi Jose,
To keep my stress level low, i usually try my best to slow down and get some rest, because that usually is a way of relieving some of my pain. Also, i watch my favorite shows it helps me relax and keep my mind off things.
I have tried brain games but, the fibro fog is unavoidable when i am extremely fatigue .
I actuslly did the epidural this year in february it helped for like two weeks and i was back to having back and leg pain. But my doctor recommended a second one im not sure if i would want to do it again.
Thanks for asking hope this answers your questions!
Hello Donna,
You are a surviver! There are so many people out their who have lived, or is living with pain today. Compared to those who just complain all the time, It is a great thing to use something that may be viewed as a weakness into strength through the wisdom of your circumstance and experience.
My questions to are:
1. Do you think your mindset would be different if you weren’t living with a chronic pain?
2. Do you think your circumstance makes you stronger or weaker ?
3. Do you think having several doctors has any correlation with your stress/depression?
Hi kimberly-ann
I think it varies, because besides being sick i have other personal issues to deal with, which affects my depression as well along with my pain.
I think it makes me stronger because i really came a long way, never thought i’d be able to finish school and i will be done this year dispite my struggles.
I dont think having different doctors adds on to my depression or stress. All my doctors are specialist who help me with different things. My neurologist and pain management specialist deals with my spine injury, my rheumatologist is for my fibromyalgia and my therapist and psychiatrist is for my depression but they all work together to help me and see what treatments and medication best works for me
I hope this answers all your questions
Thanks to Donna for sharing, I did not know a lot of this information.
I had heard Fibromyalgia during one of those commercials for medication. I also heard (in Donna’s talk) that research is going on in other countries. The FDA has very tough guidelines for medications that get approved for use. My question: If there was an experimental drug that was in development and was looking for trial volunteers, do you think you might?
Hi Ron,
If there was an experimental drug out there i would probably want to know alot more about it before i even consider it.
Im glad the video was very informative to you
Hello Donna,
I have no question for you, but I simply want to have you know, you’re a Champion and that also applies to all the millions of people across the globe who endure every day with Fibromyalgia. I witness the everyday effects of chronic pain from my dad and it took a toll on him. He had “Good Days” where I can give him a hug, he would do his normal everyday activities and that’s when the pain was tolerable with heavy pain medication. The other days I would have to watch in despair because there was nothing I could do to make the pain go away. I hope you continue telling your life story to help educate others about Fibromyalgia and I hope you continue pushing forward.
Hi Jay,
Thank you so much i’m happy you enjoyed my video. I’m so sorry that you have to witness your dad in pain and not being able to do much. It can be very difficult for people with chronic pain not just physically but mentally as well. Try to be supportive and ask him if he needs help eith anything when he is not having a good day or keep him company to keep his mind of the pain.
Thanks for sharing your story with me jay
Hey Donna,
Thanks for sharing you story with us. I learned lot from you video story.
My question to you have you tried stress management techniques ex(meditation, yoga, massage) maybe that could help you manage some of the pain? How many hours do you typically sleep at night? Do you feel rested after sleeping?
Stay strong!
Hi Yacine,
I have tried massage and it wasnt the best i was just in more pain after the massage any pressure to my body is painful in certain areas. I am considering yoga i just havent had alot of free time to do it yet. I am hoping i can next semester when i have less classes.
My sleep varies from 4-7hours. And i dont feel well rested even on days that i sleep more than 7 hours.
Hope this answers your question and thank u!
Hello Donna,
Thank you for sharing this information because I have had many questions about fibromyalgia before taking this course.
Is fibromyalgia genetic?
Do you have to avoid any foods or activities?
When do your symptoms bother you the most?
Hi Jessica,
Thank you im glad you got to know more about it from my personal experience.
Researchers havent been able to find what causes fibromyalgia. It is unknown what really causes someone to have it. But they do say genetics does have a small part to play in it and also other theories.
My doctor recommends that i should stay away from junk food, which i don’t usually do lol but i have been trying to eat more healthy.
My symptoms bother me the most when i havent slept enough or don’t sleep at all. Its usually hard for me to sleep at nights but i have medications that aide in helping me sleep
Hope this answer ls your questions Jessica
Hi Donna,
Hi Donna, Thank you so much for sharing your story with us.
I would like to know if you ever have spoken on this topic prior to taking Dr. Almonds class? Another question I have is: Are there any specific activities you have to not participate in because of your Fibromyalgia? Thanks again for sharing and good luck with your plans in the future.
Hi Michelle,
Before taking Dr.Almonds class I wasn’t ready to share so much person stuff and also i was still getting to know my medical condition better by doing lots of research and talking to other people through online support groups.
I definitely can’t participate in any sports activities. But anything that doesnt require me to do too much physical work.
Thank u michelle! And i hope i was able to answer your questions
Hi Donna
Thanks for sharing your story with us my question to you is does your problem with memory really affect your studies example before taking a test do you forget what you studied , and if so what do you do to help with your memory problem ?
Hi Christian,
Yes it does affect my studies “fibro fog” affects me often when in extremely fatigue that i cant functon mentally. But it doesnt happen everyday. When it comes to studying i usually have to read over n over again so it could stick. But i teycto study ahead of the class make my own notes. And the best way to deal with my fibro fog is to sleep.
Hope this answers your question
Hello Donna,
Thank you for sharing the information about Fibromyalgia. So i would like to know what anyone can try to make you feel better? and Does Fibromyalgia get better with time? Thanks again for sharing your story.
Hi Tashmiah,
I love when my friends or anyone makes me laugh. It makes me forget that i am in pain for a little while.
For some people it gets better with time but in my case what i have observed is that it has gotten worst over time. I’m not sure if it will get better in the future im hoping i will.
I’m glad you enjoyed it. Hope i answered tour questions
Hi Donna,
I want to start of by saying thank you for sharing your story with everyone. I truly commend your positive spirit and perseverance through this very complex illness. My question for you is, considering you memory loss; what are your study and test taking habits? Also, on another note do you plan to have kids in the future? I know you said its not certain if its genetic, and do you think pregnancy would increase the symptoms? You are a very brave woman and I wish you the very best luck!
Hi Mary,
Thank you so much i appreciste that.
I usually try to read assignments ahead of classes and try to make my own notes so i dont fall behind too much.Usually i’d have to read a couple of times so it could stick.
Yes i do plan on having kids in the future. From my research women who are pregnant with fibromyalgia says it varies for each pregnancy. Some had to leave their jobs for their entire pregnancy because their symptoms increased other felt ok in the beginning of the pregnancy until the last few months. But it all varies whatever the case may be for me i will be prepared.
Hope this answers your questions!
Donna,
Thanks for sharing your story, it was very inspirational!
My questions are:
What motivated you to continue to keep attend college, although you experience large amounts of Chronic pain?
Have you tried changing your diet to more natural foods like fruits, vegetables, and herbs since many of these foods help with inflammation in the body?
Hi Iscah,
Thank you so much, to answer your question what motivated me was my personal problems with family and not wanting to end up like them. Also i had been in college for so long because i kept skipping semesters due to my illness but i have my boyfriend and friends who have supported me throughtout it all. So that is my motivation. I have one more semester to complete and ill be done by december.
I have been trying to modify my diet to eat more healthy. I have been eating alot of fruits daily ill continue to change my diet so i completely stay away from junk food
Hope i was able to answer your questions
Hello Donna,
Thank you for sharing with us your experience having Fibromyalgia. I have a few questions that Id like to ask.
1. You stated that during the colder days your symptoms get worse. Is it due to being cold that the symptoms act up or is it just because the day is cold that it acts up (is it more psychological or is it physical cold)?
2. Has your conditions affected your choices in choosing where you take your classes? Like persay you never take Voorhes building classes because the elevators never work there.
Hi Peter,
I’m glad that you were able to learn more about fibromyalgia through my experience
To answer your questions, mainly because the brain controls what signals it sends to the nerve in the muscle to contract when we are cold to help us feel warm. In my case or anyone with fibromyalgia our nervous system isnt wired to send signals the right way to our body, because it also controls our pain level. If my muscles become tense my pain increases. This is what happens to me during winter time compared to when the weather is warm my muscles are more relaxed. So it isn’t psychological.
Well fortunately i only go as far as the midway building. I’m a human service major and most of my classes are in namm and few might take place in midway. I am part of the program for students with disabilities so im allowed to take exams outside of class and alot of the professors understand my situation because i usually speak to them about it on the first day of class mainly because i might need breaks to go work because of my leg pain. Usually happen when i sit pass an hour
Hope this answers your questions
I have never heard of Fibromyalgia before, i learned a lot from your interview. It was very brave of you to have said everything you said. I want to thank you for sharing your story with many of us. With your positive attitude i don’t see why you would not be able to reach your goals in life. I had 2 classes with you and had no idea. And will be honest even with Fibromyalgia, you are on top of school more than anyone who does not have it. I am happy to hear you are finding ways to cope with it and never give up. I only have a few questions for you. I hope you are able to answer then it is too personal i would understand.
You mentioned in the video how after seeing your doctor that she believed you. What makes you think that she was able to believe you and want to help you with your fibromyalgia? What did she see different from the other doctors?
During school what do you find more complicated? What are your struggles?
How are you able to remember when to take all the pills? What will happen if your phone dies or breaks?
When making plans for your future , for example building a family, how do you plan something big like that in your life?
Hi Kelly,
I’m so glad you got to know alot about fibromyalgia through my personal experience. Its always hard to tellcwhat someone is going through on the outside lol.
To answer your question, she was the only doctor that even though i complained of something she tested everything and always recommended seeing specialist. It could be the littlest thing and she always took me seriously thats what i love about her the most. She encouraged me to point out other symptoms i was experiencing and it may have been a gut feeling to her, but she definitley thought it was something serious for me to see a rheumatologist who later diagnosed me with fibromyalgia
What i found more complicated in school was sitting through a two and a half hour class. I swear i try to be the bravest to sit through a long class like thay mainly because i’m determined to finish school. I struggle alot with internship especially my last one. This semester i’m doing 15 hours a week because i was placed late but i keep reminding myself im almost there even though my doctors say i am pushing myself a little too much my boyfriend tells me that as well.
As for remembering my pills i put it right next to my bed but my phone alerts me when to take it. Because sometimes i forget if i have taken one and dont want to end up doubling my dose by mistake. If my phone died i probably would be suffering throughout the day and i wouldn’t be too happy about that lol. But even if my medications are like a daily routine for me i always forget to take a certain dose at a certain time of the day.
As far as my future, i’ve already set my mind to actually have a family I am just going to handle everything as it comes along in the near future. But whatever happens if im determined to do it, ill do it
Hi Donna,
First, I’d like to start off by saying thank you for taking time to respond to our comments. Secondly, I think you are a beautiful person and I commend you for your willpower. I know you mentioned in the video that you haven’t fully coped with the disease, but just the fact that you get up everyday and go to school is an amazement in itself.
I’m just curious, since your last classroom discussion, have you reconsidered joining one of the support groups that you found? Also, I hear that there are herbal treatments that exist outside of the USA and are said to heal. Would you consider experimenting with anymore (other than what you’ve already had?)
Furthermore, have you ever had a Professor who was not supportive of your ailment? And lastly, being that cold weather worsens your condition, do you see yourself relocating upon graduation?
Thank you so much again Donna. Take care; I wish you nothing but the best!
Hi Tamika,
That is so sweet of you, thank you so much!
I do plan on joining a support group later on but most of the ones i come across are online or in a different state and since this semester has been so hectic for me i haven’t actually gotten a chance to join one as yet.
As far with experimenting with other treatments outside of the US, if it is effective, I would consider it.
I always make sure that my professor’s are aware of my illness on the first day of class, with the help of the program for students with disabilities at city tech. They have all seemed to understand my situation and i havent had a problem with any of them.
As far as relocating that is definitely on my bucketlist, just not right after graduation maybe in 2-3 years from now.
I really hope i have answered all your questions, thank you again Tamika!
Donna, that was so inspirational. I did not know much about fibromyalgia until watching this video. It was very informative. I am wondering however about your childhood and the herbal medicines your grandmother gave you- if you had been diagnosed earlier on, as a child, and were given the medicines you have now, do you think your symptoms today would be less severe? Do the symptoms lessen with time? Also, generally, how often does your fibromyalgia flare up in a month?
Take care and thank you for sharing this with us!
Hi Sharmin,
Thank you, i’m glad you was able to learn alot through my talk.
I don’t think my symptoms would of been less severe because the older i got the more stressors i had in my life growing up. As you knw the more stressed i am the more i get sick. Stress is one of the triggers of my flare ups.
I dont know if later on my symptoms will improve but over the years i’ve just noticed new symptoms and some of the existing symptoms seem to get worst. Like the fatigue and pain, sleepless nights.
As for flare ups it varies from month to month and also what the weather condition is like but maybe 2-3 times a week in a good month and about 4-6 times a week in a bad month
I hope i was able to answer all your questions
Hi Donna, thank you for this video about living with fibromyalgia. I have two questions. 1) I was wondering if you have joined a support group since making this video, and
2) If you have discovered any new coping strategies for your fibromyalgia.
Again thank you for this information Donna and take care.
Hi Daniel,
I havent been able to join a support group as yet be ause most of them exist online and my semester is a bit hectic this year. But i probably will as soon as i’m able to get free time.
As for coping, I still feel like i have a long way to go to understand my illness because the symptoms alternate alot. I definitely do know which ones occurs the most during the warmer weather compared to the colder weather. I know with time i will figure out better coping strategies.
Hope i was able to answer your questions Daniel
Hi Donna
Thanks for sharing
I would like to know what types of thing do u do on a day to day bases to keep your stress to a minimum?
Hi richard,
To keep my stress at a minimum i try my best to manage time better because this semester is so hectic for me. So i have been trying to complete assignments early so that it doesnt implode on me at the last minute. I always watch my favorite tv shows when i need to just relax my mind and i also listen to music.
Hope this answers your question
Hi Donna, thanks for sharing with us, honestly I did not know about this disease, but I felt relief When you said you get SSI, Because it shows That disease is Recognized as Such and is not on your mind like some doctors Said, Besides it is difficult That is always sick. My question for you is, that you ‘do to highlight the fire burn skin? do you take any medication for it Addition? and how long does it last, like when it goes away?
Hi Suzanne,
Thank you, some people with fibromyalgia aren’t as lucky as me to get SSI . I think the only reason they approved mine is because of my spine injury and depression, because its difficult to get SSI if you only have fibromyalgia and no other ailments along with it.
To answer your question, there is no medication for it unfortunately, all i can do is sleep it off or reduce my pain level through my medication. It’s usually really bad the higher my pain level gets.
It can last up to a whole day or over 4 hours.
Hope this answers your question
Hello Donna, thanks for sharing that input. I wanna know what strived you to keep on going even with the pain you had, and kept on attending school?
Hi Adam,
Your welcome, and what kept me going is the people who i surrond myself with and those who support me. They always remind me how great i am and also because i have been in school for so long i didn’t want my illness to be the reason i gave up on school.
I hope this answers your question
Hello Donna,
Knowing how painful and stressful your days can be, I want to thank you for taking the time to tell us about your experience with this disease.
Some of the questions I have are,
You mention that in addition to this chronic disease you were also diagnosed with depression and are currently under medication for this, but is there something else you are doing or putting on practice to overcome your depression?
When you are in tremendous pain, do you still do your daily activities?
Hi joseline,
You’re welcome i’m glad you got to learn from my experience.
Along with my medication i have been seen a therapist once a week and a psychiatrist every month. I always try to surround myself with friends who make me laugh constantly.
When i am in tremendous pain and it’s crippling to a point where i can’t get out of bed, i am not able to do any activities.
I hope i was able to answer your questions
HI Donna, i am so sorry for being late. Before i start i need you to know that i am really proud of you, you are a great inspiration.As a young woman you are very strong and i respect you for that.Honestly, i did not know anything about fibromyalia until now, and you have taught me a lot about it.
My questions for you are: Do you have any diet or meal plan you must follow in order to ease you with the pain? and also, while you dealing with this chronic pain do you have any favorite sports or exercise to help the pain to slow down