Posted by: Shira Danin | March 18, 2010

Being a Student with Fibromyalgia – The Full Story in one Page


I published this story in 4 parts but I found that not everyone continues to read all the parts.

I thought perhaps it would be easier to read it if it’s all in one page.

I’ll start with my life before. I grew up in Jerusalem and until I enlisted in the army I was fairly healthy. I always felt strong physically and other than a tree pollen allergy (which is ironic considering my Prof. of Botany dad) I didn’t have any major health issues.

In the army my job was to visit guys from the artillery unit who are sick or injured and resting at home or are hospitalized. The job required about 70% of my time to be spent on buses and waiting for them, and 30% of the time visiting the soldiers. During my service I developed 3 protruding discs in my lower back and had to take a month medical leave from the army. After my release from the army I had a few more back attacks but with the help of Alexander technique lessons I regained my old self back, most of the time I was alright.

I started a degree in computer sciences at Ben Gurion University. During school I had a lower back pain flare up and my boyfriend at the time, as well as my friends from school, would help me carry my back pack from class to class to home.

After a year and a half I realized that a computer sciences degree wasn’t for me and I decided to switch to a degree in management. I had 6 months till the next academic year was going to start so I decided to travel in Nepal and India. During a trek in Nepal my left hip joint started to hurt. It got so bad I couldn’t walk. I had to fly back to the closest town and rest for three weeks. I managed to rest my way out of the pain and continued with my trip.

I got back to Israel and started my (2nd) bachelor degree, this time in management. At the end of the first year, towards the tests season, my hip joint awakened and started to hurt again. I remembered the pain from Nepal and felt it was similar but I didn’t really make the connection. I just tried to rest and continue on with school. It was a bit difficult to rest since I lived on the fourth floor, no elevator.

The pain didn’t go away. The pain progress and the left elbow joined in on the fun. It was scary. I didn’t get hit or a bump and the pain wouldn’t go away. I had three tests that I wanted to improve (we get two chances to take tests in our bachelor degree). I managed to improve two grade, in one I even got a hundred, while studying for the third I just couldn’t concentrate with all the pain.

I decided it was time to go to a rheumatologist (after getting x-rays done) and he diagnosed me with tendonitis and gave me a shot. The shot helped a little but soon after the pain returned and worsened.

I moved to a ground floor apartment and adopted another cat (the third). The pain kept spreading while I was on my summer vacation. It also spread out to my right elbow and hip joint. My family took me to the ER when the pain became unbearable. It didn’t help, the pills they gave me didn’t help with the pain. Another rheumatologist gave me steroids that had no effect.

I had a brand new boyfriend at the time of the flare up, so before I got hospitalized I decided to break up with him. I didn’t have enough energy to deal with the pain and develop a relationship at the same time.

On the first day of the first semester of the second year I was hospitalized in Haddassah Ein Karem Hospital. I was at my worst shape in the hospital. I didn’t even think about school. I couldn’t eat by myself, I needed help showering and even opening the door of the bathroom. When I went to the elevators and back (my room was the closest to the elevators) I felt I would faint from the pain and the weakness. I wore elastic bands on my elbows, knees and ankles. After 8 days in the hospital with a steroid IV they let me know I was a healthy girl with: maybe, sensitivity to physical effort, maybe atypical fibromyalgia, maybe mental and emotional stress. So I didn’t really get any straight answer. I was sent home with a referral to physiotherapy.

Me after being told I was being released from the hospital


The beginning of my rehabilitation I did with a physiotherapist that came to our house. At first I was sure I could make up what I lost of the semester, so I printed out the presentations of the lessons I missed. I sent a letter to the Management administration .

During my days at home (parents’ home) I realized , that without a car, I will have difficulty functioning from now on. Lucky my parents were capable of supporting me and arranged for me to get their car (they bought a new car).

When I got to Beer Sheva, to my home and friends, I realized I won’t be able to go back to school for that semester, it was too much pressure. I contacted the head administrator in dept. of management and asked for a semester off so I could get back on my feet.

While in the hospital and right after all the doctors recommended that I get some alternative treatments. I went back to my psychologist to help me cope with my new condition. I went to a wonderful lady here in Beer Sheva that gave me lessons in Alexander Technique. She also referred me to Eyal Shani, who treats me till today with Shiatsu, acupuncture and a variety of methods from the Far East. I participated in Chi Gong lessons, which is kind of like Tai Chi only a lot slower (that’s my definition anyhow).

I learned very quickly that one of the most important things is knowing to listen to your body. When you’re hurting and the body is too exhausted, you have to rest! I know this pain makes no sense, and it seems the pain has no use, no reason. The pain really is useless, but it’s still important to listen to it.  I know that sometimes I have to give myself the time to rest.

Even when I really want to go out or do something with friends, I can feel when I can and when I can’t. And when I can’t, which is most of the time, I rest. Every little exaggeration can make me drop, and I know I have to rest. I know I have to take a nap when my body is too tired to move in the middle of the day. I had a couple of weeks here and there where I had to sleep for two or three hours in the middle of every day. And it’s ok. Whatever the body needs, and you can give, you give.

It took a few months but all the treatments helped and I got well enough and felt like I could go back to school.

For some reason I thought I could go back to the job I had before the hospital. In retrospect it’s possible that the pressure I experienced at work helped me develop the pain and the Fibro. I went back to work part time and they relatively were considerate with my difficulties. After a few months I realized it wasn’t possible and I left work. The reason that helped me leave was the fact that the way the managers treated us was atrocious and there was a lot of pressure and disorganization. After a few times they induced crying and stress attacks I realized it was bad for my health to stay there.

When I got back to school I was worried on how I would handle school, so I chose to take only 3 classes. I didn’t want to overload myself. And I was right.

At first it was hard for me to handle the bureaucratic side of it, and tried to avoid it as much as possible. I didn’t try to talk to the administration or the professors. I think it was hard to talk to “outside” people since I had no clear way of explaining what was going on with me.

I managed to finish the semester and my physical condition to the point where I could fly and travel for two months abroad.

I was worried that traveling would be hard but I knew I wasn’t planning any trekking or long walks. I mainly wanted to have fun. I thought I deserved a little fun after all the pain I was enduring. When I was abroad my sister contacted me and let me know that if I want I already have a job waiting in her and her husband’s company.

I was very glad to join the team and I started working when I got back.

I came back from India about 5 days before the semester started. I realized that I in order to get a grip on this degree and what I need to do I needed to visit the Dept. of Management’s head administrator. I met Yifat Ben Simon (with Henna on my hands left over from India) and told her a little about my life with Fibro. She was great, and helped me understand which classes I still need to take and register to those classes.

Since then, with ever question I had or any help I needed registering to courses, she always helped and was very nice. I think that having me explain about the bandages, the pain and all my limitations helped her understand.

A bit after I came back from India, I went to see Dr. Booskila, the expert on fibromyalgia in Israel. He let me know that even though they wrote on my discharge note from the hospital that I may have atypical fibromyalgia, what I have is exactly fibromyalgia, by the book. The fact that I had a name for my condition helped me cope with it. It allowed me to learn about my condition and connect with others like me.

Because of the pain and fatigue I can’t get through more than a class or two at most. I can’t take a class that starts in the afternoon because at that time of the day I am beyond functioning outside the house. Sometimes I need Yifat’s help to register to an earlier class if there is no available space when I try.

In the first semester of my third year I went a little crazy and maybe “forgot” the fibro a little because I thought I could take 8 classes and work. I wanted to finish school so bad that I thought the more classes I take on, the earlier I finish.

I started going to class with an electric heating pillow on a regular basis. I also talked to almost all my professors in one of the first breaks to explain a little about the fibro. I felt like it was important they knew. In some of the classes I couldn’t sit for the entire class and had to stand against the wall for some of it. I didn’t want to start a discussion about it in class which is why I explained ahead of time. Also, I didn’t want them to think I walk out of class out of boredom, and know that it is out of pain.

The truth is I chose to talk with the professors I most enjoyed sitting in their classes. I came to the class with 4 elastic bandages on my hands and the electric heating pillow, so when I came in the break to talk with the professor about something related to class, they would usually ask about all the “equipment”. That way I would explain with a sentence what fibro is “a decrease in the pain threshold”, and then explain a little about how it limits me regarding to school.

I haven’t met a single professor that didn’t show empathy, at least from the ones I chose to talk to.

Since then, in almost every class I take I talk to the professor and sometimes the TA. I didn’t feel that talking to the TA’s was very important, but it couldn’t hurt.

The same first semester of the “second” year I also got a laptop. Thank you to my parents again.  It became very hard and challenging to sit in front of the computer on the desk. This way, with my laptop I can let most of my body rest. A little less pain means a little more concentration.

My studying position

By the way, in Israel, most bachelor degrees (that aren’t engineering) are only 3 years long, not four like in the US. While degrees here in Israel are only 3 years, they are the same number of credits as a university in the States, sometimes more.

Somehow I managed to hang in there with a part time job and 8 classes. I managed to pass all of them on the first try except for maybe one I had to take again.

I managed to hang in there but my pain was getting worse. The part time job was getting smaller and smaller, and in the second semester I only took 4 classes.

During the semesters I try to get to as many classes as I can. My problem is, that when I find out the professor is horrible and doesn’t teach anything beyond his prepared presentation, I find it pointless to get to the class. I feel like it’s a waste of energy. So far most of my grades have been fine, so as far as I’m concerned, doing the best I can is enough.

When you have good friends, and even good acquaintances, you can cope with missing classes. It’s just important that people know what the pain situation is and you can get copies of the lesson summary. It could have something to do with my degree being relatively easy (relatively to Computer Sciences) so I didn’t have a hard time making up lessons.

I once wrote in my blog that the key word regarding life with Fibro is “Balance”. Balance between rest and action, checking where I should “waste” the little energy I have. How much will I gain knowledge and interest wise if I come to class compared to how much energy and concentration it requires. To balance between the support the elastic bands give me when I need to work with my hands, compared to the pressure they exert on my skin and the pain that comes with it. To sum up, every time I leave the house by car or by foot, is extensively calculated with regards to energy demanded vs. benefit.

Even a shower, eating, going to the bathroom, it’s all calculated, it’s all done in the most energy efficient way. I really have my very own energy crisis.

During the third year’s  second semester I met my boyfriend Tomer, through facebook, the “R U Interested?” application.

When I met Tomer I was in relatively better situation, pain wise,  in the first months of the relationship. Since the beginning I told him about the fibro. As time went by I explained more and more about what it means and how I feel and how much I hurt.

At first the pain didn’t really restrict us in any special way. We managed to go on a weekend in the dead sea,  go see some Soccer games, visit a lot of friends and family and more fun things for “him and her”

Tomer and I at a Soccer Game

He always helped me with the dishes and organizing, and anything I asked for around the house. He accepted me with all the pain and always takes care of me. He can hear over the phone in my voice how hard my day was and how bad my pain is.

Tomer and I just met at the same time he got himself a new game and a new playstation. The game is Guitar Hero. You actually get to play a band with guitars, drums and a mic. I happily joined in on the guitar hero fun and my main job was to be the Drummer. Our band was called “Fibro Fun” (a sarcastic name of course). It was fun and also a bit like therapy. The drums work my back (because I have to sit straight), my hands mostly and also my right leg (which works the bass). At first I felt the drums were strengthening me. But, after a few months I couldn’t play the drums anymore, due to the pain, and I moved on to being lead singer. Despite my name which means singing in Hebrew, I’m not very good at the actual act. I really enjoy singing even if all my band mates end up deaf. So I don’t really know how to sing but to succeed at the game all I need to do is match the intonation to what is show in the game, and I can manage that.

During the summer of 2009 my sister and brother in law offered me a full time or almost full time job. It was really exciting because I really enjoyed working with them and I was glad they were please with my work and wanted me to do more. I immediately started working hard and managed to work maybe two days for about 6 hours straight each. The excitement, stress and physical overload crushed me. After a couple of weeks I had to stop working. My hands hurt so bad and still do that it is hard for me to write and work on the computer while concentrating at the same time. It was very hard for me to takea break from HRD. I enjoyed working there so much and it is always so interesting learing from Morit and Yakov (my bosses). Since that flare up I haven’t been able to go back to work. I hope with all my heart that after school I can go back.

During school I know there is no way I can work. I can barely get all my school work done because of the pain and mostly because of the difficulty to concentrate they cause.

And so, finally at last my final year at school (really, this is the last one).  An exciting event, that still worries me because I never know how I will handle the challenges  I face in combination with the pain.

If you look at my grades since I was inflicted with fibro, up until the end of the third year, you can see a gradual decrease which I feel is caused by the pain. Because my hands hurt so badly, it is very hard from to write with a pen or a pencil. I prefer the computer because typing is easier and faster than writing.

Everyone who knew me suggested I ask for some additional time or some other kind of help for the tests. For two years I withheld from doing that because I didn’t want to deal with the bureaucracy. Also, the only help I knew I could get was extra time. For me extra time meant torture. I felt like they don’t have a way of helping me. In the second semester of last year I may have passed all my tests with the first try but the grades were very low. I knew they would be low because most of my energy during the test went to working my hands and not working my brain. It was very hard to concentrate or think.

This previous first semester of my final year I enlisted in four classes. I realized it couldn’t hurt if I tried to get some help, and maybe they do have a way of helping. I contacted the Dean of Students office. There I talked to Maya Pankar that explained to me what the process is with the medical board and when I should expect to get an answer. The first answer I got was “extra time”.  At first I got scared because for it’s a punishment. I started to feel a little helpless. I went back to Maya and she explained I can appeal and ask to use a laptop in the exams. She explained I have to write a letter and specify why extra time won’t help me and why a computer would. I wrote the letter and got a positive response a couple of weeks later.

I was happy but I wasn’t sure who actually gives me the laptop to use for the test (it has to have only word and excel on it, no internet). Because Yifat was always so nice (the head administrator in the Dept. of Management) I called her and asked. She explain the Dean of students take care of that too. I went back and got Yeela Piterberg who explained really nicely what I need to do and how the whole computer thing works.

I go to her before each test and she gives me a laptop and a portable printer. Luckily I have a good friend, Omri, who comes to help me with each test. Just carrying all the equipment and hooking it up to power would have exhausted me towards the test. Omri helped me carry, hook up and unhook everything. The ladies who watch us during the test and make sure we don’t cheat realized I had a physical limitation and were very nice to me. The last test season that ended a couple of months ago went by much better with grades above 80.

So what I learned to be most important is asking for help when you need it. There are people whose job it is to help. When you explain calmly and from the heart how hard it is, they just want to help. It is big reliefs to have someone want to help when you feel the pressure and stress of the exams pushing down on every joint in the body.

Even with the computer I suffer from a lot of pain during the test: the computer is on a desk and not on my legs so I have to lift my hands, and I have to sit at a 90 degree angle. The classes during the semester are hard for the same reasons.

My way of coping with the pain is stretching and deep breaths. I stretch my hands and back every ten minutes. And every few minutes I would take some deep breaths. During lessons I also get up every 15 min for about 10 minutes, that way I can move and stretch my legs and knees.

After my latest flare up in the summer I went back to getting shiatsu and acupuncture, I went back to my therapist and I started going to Watsu treatments with Ohad Drori at a place outside beer sheva. The treatments in the water taught my body a new kind of calmness. A calmness I haven’t felt in years. Sadly sometimes my body is so sensitive that even in the heated water I’m cold and in pain. But together with Ohad I’m learning to work my body in the water and deal with the cold.

I tried a few pills that were supposed to help with the fibro (usually some kind of anti depressant that are supposed to help with the fibro pain as well) and different pain killers. Till now I didn’t feel much effect from the pain killers and fibro pills, they didn’t help. The only pill I take is Elatrol (Amitriptyline HCI) and that is because it helps me sleep soundly through the night. If I don’t sleep well my body doesn’t get a chance to rebuild itself and recuperate from the hard day it went through.

Good sleep is vital to coping with Fibromyalgia!!

With all the challenges and difficulties I went through and still do, I never let the thought of leaving school stay in my head for more than a moment. I already invested so much time and energy in school. My family and friends have helped so much and supported me through all of it. They still do. I feel I’m not alone. I have someone to turn to.

Not always. Sometimes I just need to be with myself and sink inside my head. But when I am ready to come out, there’s someone there.  This support is Priceless. When I look back, if I hadn’t talked, if I hadn’t shared my feelings and my pain, they would not know, and I would be alone!

Me and my understanding mom

This “Fibromyalgia Syndrome” makes you feel so isolated; it is so hard to explain this life when everything looks normal on the outside. There is such a strong ALONE feeling that you just have to find an outlet for all your thoughts, feelings and tears. You just can’t life with this alone. (or at least I can’t)

And you can’t give up: the years since I got my fibro may have been extremely hard but I learned so much about myself and others. I had fun new experiences and I got to travel and meet new people. So it was hard but it was also a lot of good. I’m very happy about the years and experience that passed, and that I didn’t give in and sink. I kept living and I managed to meet the love of my life. If I hadn’t insisted on “living” this life and not sinking into the pain, I don’t know if I would have met Tomer and I really don’t know if we would have fallen in love. So it’s all for the best, I am who I am, with the pain and the laughter and the crying.

Thank you for reading my story, I would love to hear your thoughts 🙂

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Responses

  1. It was really interesting hearing about your experiences with fibro in Israel – I’m originally from the UK (and am now in Australia), but most of the people I know online who have fibro are American. It looks like the treatments are pretty much the same wherever we are, though. I was only diagnosed last year and I’m only just starting to find the right balance to keep me stable.

    Thank you for sharing your story. 🙂

    • Thank you so much for your comment Jeneli. Most of my Fibro friends are also american so it’s nice to meet you.

  2. I loved visiting here today and I admire your courage. I work at a small place that helps people reverse fibromyalgia naturally, and I just could travel by your blog and not share with you that there is hope and healing…I see it daily and hope and pray that you will find a way to reverse yours.

    • Thank you Colleen, i would like to see the website of the place you work at.
      Thanks for your prayers and the new options you suggested..

  3. Your story is quite interesting. Here in America people are less helpful. You are very lucky that accommodations were made – most colleges here won’t do all that.

    I am a mother of 4, married, and educator both public schools and a University Professor, and missing work is not acceptable. In fact a normal day at the school district office is 12 hours. Then I teach an online college class for another 2 hours. When I get home doing much of anything else just isn’t happening.

    The ability to take time off, not work, or have others work around you schedule would be a blessing.

    Curious question – how do you pay for medical care when you are a student and not working?

    • I have wonderfully supportive parents

  4. Shira – (What a beautiful name) I read your blog with great interest.
    I have been diagnosed with Fibro recently. One of many diseases I have, many of which started in my 30’s.
    I finally retired after using up all my vacation days, sick days, etc., and realized that I really wasn’t working up to my own goals, and fortunately, didn’t have to work.
    I have been reading posts from people on several Fibro sites and am amazed at how the younger people, that includes you, deal with this disease and working and/or going to school. I don’t know if I would be strong enough to do that.
    Part of my way of life has become staying inside and being on the computer. This last year I started a blog. I had no idea what it would be about or how to do it. Turns out I tell small “everday” stories. Some dealing with Fibro and other problems. But not just being sick. Everything, or at least I try, has some humor in it. Humor is what gets me through most things. When I have a good laugh at myself I can feel my brain getting better.
    Please try my blog, see what you think, and let me know! I know I have readers, but few comment. My blog is at: http://www.texaschiefs.com
    I also have twitter and of couse facebook.
    I look forward to hearing from you and wish you the best in health and happiness.
    ♥ S

    • Hi Sharon,
      Thank you so much for your comment.
      I will read your blog and Comment.
      I hope we both find a way to leave the computer at times and enjoy the fresh air outside dispite the difficulties involved 🙂
      I wish you all the best and less pain and fatigue,
      Shira

  5. Thanks for your inspring story, but after reading it and being on facebook for a while before I found your page, I am now shattered! I am part of a support group in Plymouth in England, if you can find people with fibro near you (or even on facebook) you tend not to be so alone.
    You definately do learn a lot about yourself and others. I have recently discovered that a lot of people tell me all sorts of things about their personal lives and that I love to help and listen to them, so have begun a counselling course at my local college. It’s only 3 hours a week on one morning, but exhausting. I will think of you when I feel like quitting and WILL complete the course x

    • Thank you so much for your comment. It’s my honor to give you strength.
      I’m sure you will complete the course successfully, just don’t give up!

  6. Shira, I read your story with many mixed emotions. I had a tough case of Fibro & Chronic Fatigue Syndrome for over 15 years. At times it seemed as if it would never end. But like you, brave lady, I could not quit. I now work with others to help them heal from a mind/body/spirit perspective. If there’s anything I can do for you, let me know. What I have created to help people does work ‘at a distance’- even overseas! You can listen to an Awareness Day teleseminar that I recently completed: http://www.getwellhealth.com/awareness-lhth/
    Many blessings for your health & happiness,
    Cinda Crawford

  7. […] לצערי לא לכולם יש כח לקרוא עד הסוף אז פרסמתי היום גם את כל הקטע בעמוד […]

  8. Your story is so interesting. I have had fibromyalgia for 20+ years. I work as a nurses aid in a nursing home. I have pain most of the time. I have recently talked with my co-workers about fibromyalgia. I feel education will help other people realize what we go through and maybe it will help someone else. Gentle hugs to you.

  9. Shalom Shira,
    I was born in Turkey Izmir .n 1956 .From İtalian and French parents.İts been more than 20 years I am suffering from fibro, but was diagnosed 10 years ago.I still didnt find a doctor to help me .They say NO STRESS period.
    Well I am proud of you god bless.
    I was trying to hide my fatigue and pain I was raising 2 children and had to work full time.No one understood also because I was ashamed to show it.
    Then when I started asking for help NO ONE believed me.They were laughing at me YOU ARE STRONG YOU CAN MANAGE İT was all I was hearing .Now ı retired and do not have the energyor the will to go to the toilet I am depressed from neck and shoulder pains, brain fog, allergies but I have to struggle to find a new strategy to deal with everyday life.When I have a good day I rush to do all I should do and then I am ın paın agaın.I know I have to rest and do little but whos going to do all the things I need too?Sorry, I am not as depressed as I sound but its the truth I do not have the energy to explain myself to anybody, anymore I gave up.I am going to use my little energy FOR MYSELF.I love gardening , I love to read and research for my fibro .I was such a survivor that I even didnt give importance to myself and my state.So NOW I will try to give myself some credit.
    Thank you for your inspiration
    God bless

    • I’m Honored to have inspired you.
      You should take care of yourself and give yourself credit for everything you did and still do.
      I know how you feel, I too have a hard time getting out of the depression sometimes…but commentslike yours cheer me up.
      Keep worrying about yourself and taking care of you.!
      Have a wonderful pain free week!

  10. Dear shira,

    I was diagnosed with fibro 2 years back, in the beginning of my 12thstd in school. i suffered a lot that year, teachers did not fully understand the issue and it wa so hard to explain , but i managed to pull through finally ,the school helped by giving me a bit of extra timme and with extra supportive parents i was able to go through the year – though it wasn’t easy. and so we decided i take a gap year before attending college so i can get my pain better – but now the more closer the time is till i leave for uni, the more i’m worried, asi have gotten to a coll abroad in the US, wont have my parents around to help me and it is a fairly hard heavy courseload that i will have to manage. i am so inspired by your story and was wondering if you could help/ give me advice on how to cope with my fibromyalgia while doing uni work and coping with courseload. also i want to pursue art in college, and i love it but painting and drawing kills my shoulders and arms! do you know if US colleges help students with fibromyalgia – is it even considered a disability?


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