Advice for keeping spirits up at critical moments...

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New Member

Date Joined Mar 2010
Total Posts : 2
   Posted 3/22/2010 7:13 PM (GMT -7)   
Sorry about the following novel, but I would think you were awesome if you kept reading:

So I'm new to this forum, but sadly am not new to Fibromyalgia. Although I remember feeling tired and achy all the time as early as 15 years old, it wasn't until I was 19 that I finally had a doctor seem interested in helping and referred me to a rheumatologist. Unfortunately, he seemed less interested. After the many blood tests and X-Rays I was subjected to, he told me that, "Even though my symptoms seem likely to be a result of fibromyalgia" he was "reluctant to offically diagnose me with it due to my age". I felt dejected, at a loss, and frankly…just done with the doctors. Ever since then, I've attempted to deal with the mysterious syndrome by myself. Despite the excruciating pain I feel on some days and the overwhelming exhaustion I suffer despite getting enough sleep, I just keep telling myself I can get through it.

And I have been dealing with it emotionally fairly well until very recently. Lately, I've been feeling so alone and so fed up with feeling like this. I'm a senior in college, about to graduate in 6 weeks, and don't have the motivation that I once had. People may say it's simply a case of senioritis, but I have always cared too much about my grades for that to be the case.

I can't help but sit around and wonder, "How the hell am I going to get through this?" If anyone can offer advice, support, or just understanding, I would greatly appreciate it. I can't talk about it to anyone else, and I just feel like I need a good knock to the head to get my normal self back.

Regular Member

Date Joined Jun 2009
Total Posts : 22
   Posted 3/22/2010 8:18 PM (GMT -7)   
I don't know if you've tried this, but you should ask your primary doctor or clinic at school to give you a test for Mono AND Lyme.  I asked for a test for Mono after years of confusion on why I felt so bad and had such fatigue.  The doctor automatically tested for 5 or 6 things including Lyme, based on my symptoms and fatigue.  I think he had tried to test for this 2 years earlier but it seems that the blood lab altered the doctor's orders.  I couldn't believe what the girl said - I just had another western blot test and asked where they send the test for the results.  She said, oh we get so many of those that we just test for the Elisa or Lyme Reflex.  I was shocked!  I might have known what I had much earlier had they sent the test in as it had been written. 
Anyway, it's essential to get tested because Lyme and Fibro are treated entirely different.  One tends to use antibiotics and the other tends to use steroids.  The problem is, if you have Lyme and you go the route of Fibro, the steroids will totally kill your immune system and allow the Lyme to take over.  With Lyme, you can never take any steroids for any reason.  It's worth checking out.  No matter how strong you are, these illnesses will take anyone down.  Big strong baseball players are not able to keep going until they get treatment.   It's not a matter of being strong and getting through it.  It needs treatment. 
I hear how important school is to you and you are in the last 6 weeks.  I think you might need a doctor to check this out so you can complete school and get the grades you deserve since you have worked so hard to do this.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 3/22/2010 8:19 PM (GMT -7)   
Welcome to the family, alrsmith. Sounds like you have been biting the bullet for a long
time. Chronic pain and fatigue can wear you down. I suggest that you see a new rheumy
who can re-evaluate your situation. Once your pain is controlled, it will be easier for you.

On top of page one you will see fibro 101, it is a great resource for us fibromites.
Do what you can do to keep your stress down. I'm sure you realize it causes more pain.
I'm a big believer in relaxation therapy. I do deep breathing and meditation. I also
like to soak in a hot bath, listening to music.

I hope that you will take time to see a new doctor. That is the first step to get the right
treatment. You sound like a very strong individual to me and I believe you will do just
fine. I'm glad you have joined us, this is a great forum, lots of people who really care!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 3/22/2010 10:22 PM (GMT -7)   
Hi and I'd also like to Welcome you to the Fibro Family. This truly is a family who takes care of each other. We also are careful and vigilant about keeping people from being led down bogus trails and getting taken by hoaxes. Fibromyalgia is a disorder that is very clearly defined, even by the National Institute of Health and many university research departments. I'm just sharing this because there are always folks out there who are willing to take your hard earned money, your insurance companies money and most of all your time...which in my opinion is not only more valuable than money but basically is all we have...time.

OK, I've pontificated enough so let's get on with trying to put you on track to a better life if we can. I do agree with Robin that reading the Fibro 101 post is great. Learn all you can about fibro and what it is and what it is NOT. I will disagree with the one comment above that most people who have fibro don't use or get steroid treatments. There are a few basics with fibro...keep those muscles warm, keep them stretched, and don't sit still for long periods of time. That's one of the worst things we can do. Mornings are miserable for us since we mostly were laying still during the night.

Some folks do use pain medication and others are able to get by without or use only OTC meds. But this brings me to your rheumytologist and him not wanting to diagnose you with fibro because you were too young??? True, most people with fibro are not in their teens. But we have members who have had fibro since they were born. This doc is afraid to treat your fibro is what's going on. He's afraid to start you will want pain medication and what the prospects are over time. That's still no reason to not give you an honest diagnosis.

Getting your 'normal' self back probably isn't going to happen. Wait! Before you can have a very wonderful and exciting life but it won't be exactly like you had it before. As you learn more and more about fibro you will figure out how to work with your own body and what it takes to keep going. This place is full of people who are living their lives just that way. Sure you hear us complain, but it would be abnormal if all we did was talk about how wonderful our lives were. Here is where we can voice our frustrations and know that someone really does understand.

So grab hold and walk this road with us. We'll be happy to take you along...
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17556
   Posted 3/23/2010 4:16 AM (GMT -7)   
Hi, alrsmth, and welcome!  I'm glad you found us and joined in.  You know, before a diagnosis of fibromyalgia is given, we are usually checked for other illnesses that have many of the same symptoms.  There is a link in Fibro 101 called What Else Could It Be.  You will see what they want to rule out...Lyme included.  We do have a few members that have Lyme and Fibro but most of us just have fibro.  Most of us don't take steroids for fibro, either so don't be concerned about that.  But stick with us and we will try to help you feel a little better.
It is important to keep moving with fibro.  If you sit or lay too much, you will be stiff as a board.  There are some gentle stretching exercises that really do help in Fibro 101.  I also walk and swim as my form of gentle exercise.  You are young so you probably can do a little more but pace yourself.  Build yourself into what you want to do.  Do you know what I mea?  The exercise helps with pain and fatigue by oxygenating the muscles. 
I take malic acid/magnesium supplements and vitamin D3 to help with pain and fatigue, also.  There are links about these in Fibro 101.  Many with fibo are deficient in these vitamins and nutrients.  So, this might be something to discuss with your doctor.  My doctor said the malic acid would not help me but it wouldn't hurt me, either, so I tried it and he was wrong!  He did test my vitamin D levels through blood work.
Attitude plays a big part in this illness.  It's so difficult being young and thinking your life is already over!  You get so down and sad.  But, you know what?  Your life isn't over!  It's just beginning and you can have a full and enjoyable life in spite of fibro!  I know I have so far.  I've done a lot of traveling in my life, and done things like walking all day through the streets of Italy, standing on a glacier, snorkling, and even parasailing while having this illness!  Many members work full time and one of our mods owns a wedding cake business.  Just think of standing over a cake for hours piping frosting.  But she does it!  So, you do have a good life ahead.  You just need to find what helps you control the pain from fibro. 
Start looking at all the things you can do and don't dwell on the stuff you have difficulty doing.  Set practical goals for yourself each day.  If you focus on things other than how you are feeling, the pain usually fades in the background for a while.
The weather is finally getting nicer for most of us so get outdoors and enjoy it.  Look at the beauty around you and count your many blessings.  I know when I do this, I feel so much better and have a big smile on my face!  
Meanwhile, we are here for you.  Don't hesitate to ask questions because we want to help you feel better.  I'm happy that you are here and I hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 3/23/2010 6:44 AM (GMT -7)   
Hi alrsmith and welcome. Hang in there you are so close to the end of school. I have a grandson that is a senior but he has to do his student teaching next semester.
I didn't have symptoms of fibro til my late forties and dxd in early 50s so no, I don't know what it must be like to be so young and to have to deal with fibro, if that is what you get a dx on. Has any doc did the tender point test on you??? You can read about that in the fibro 101 thread too.
As you already know, knowledge is power so learn all you can about fibro and this is a good place to learn and find a doc that believes fibro is a real disorder. You can't work on what works for you and what doesn't if you don't have a doc that understands that all fibromites are not created equal and what may work for one isn't going to work for everyone. It is all trial and error til we find the right meds that work for us and we find balance in our lives. What I mean by balance is what we can do on normal pain days for us without pushing ourselves to the point of exhaustion and causing more pain. A lot of us tend to push too hard on good days and end up making ourselves feel worse for it or on bad days sit and lay too much which only causes more pain. Like right now my body is telling me I have sit long enough this morning and I need to get up and do somethings and stretch even though I have a cold and sore throat and got up way too early this morning. I have learned to listen to my body and not do what that evil side of my brain wants to do. devil
Good luck and I hope you have anwers soon.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
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Veteran Member

Date Joined Apr 2009
Total Posts : 673
   Posted 3/23/2010 6:48 AM (GMT -7)   
Some doctors can be jerks, but not all of them. You should do some research and find a doctor that specializes in the treatment of fibro. Don't feel depressed or like a failure if you can't do this on your own. There are medications and natural remedies that can help ease your suffering. I, like you, was diagnosed at an early age. My doctor was hesitant to diagnose me because of my age. But when countless tests came back normal, I was sent to a wonderful rheumetologist who then diagnosed me.
I am sorry you are going through a rough time. Hang in there. Keep us posted on how things are going.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. Dr. Seuss

Forum Moderator

Date Joined Nov 2008
Total Posts : 5953
   Posted 3/23/2010 9:03 AM (GMT -7)   
I had symptoms young too (though not as young as you) but a 15-year-old girl in my church was recently diagnosed with Fibro and I feel so bad for her. I try to explain to people sometimes that it's like you're living "life lite": you just can't jump in with both feet and let yourself do what comes naturally, you always have to weigh the pros and cons of doing something. That alone can wear you down!

I've just joined this forum myself, and the people here, along with my VERY good doctor, have convinced me that I need to push myself more physically. In my case, unfortunately, it means more pain meds - more than I've dared take before - but hopefully that will be temporary. I haven't been particularly sedentary, but I am very cautious about lifting or carrying anything....I mean anything!

So, I wish you all the best. You really aren't alone!

New Member

Date Joined Mar 2010
Total Posts : 2
   Posted 3/24/2010 9:57 PM (GMT -7)   
Thanks for all the responses and the support. For what it's worth, I've been tested for Lyme, lupus, and mono many times before. All tests were negative. My concern was less about finding out a diagnosis, as I have been told that it is likely fibro. My Dr. just didn't want to officially diagnose me with it due to my age.

My reason for posting was based more on the mental and emotional side of fibro. Being so close to the end of my college career, I really cannot afford to lose my energy, so I was asking about emotional support and how people keep their spirits up.

Again, thank you for your kind responses and help.

Forum Moderator

Date Joined Nov 2008
Total Posts : 5953
   Posted 3/25/2010 9:18 AM (GMT -7)   
That's a tough one!  For me, it's just one day at a time.  Trying to see some humor, trying to count my blessings in spite of it, (which isn't easy when you're in agony!) trying to find a balance between listening to my body and telling it to shut up.  Relaxing, watching movies to forget about it. 
I'm sure others said this (don't remember) but varying my position, often, helps.  Sit for a few minutes, stand, drive, lie down, stretch, walk.... you probably know all this already, but it's really important.  Good luck with finishing college!!
Diagnosed: Fibromyalgia, Meniere's, mild liver damage, keloid scar tissue (from burn) on back, arthritis, lumbar disc damage, IBS, migraine, herpes
Meds: Nortriptyline, Clonazepam,  Effexor, Darvocet as needed
multivitamins, l-lysine, probiotics, magnesium, calcium + vit. D, vit. C
Chiropractic adjustments

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