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Posted 8/23/2012 1:22 AM (GMT 0)
Hello all, I am a newbie here. I have not been diagnosed with FM; however, am going to the doctor tomorrow. Which is part of my question….

First I will start with my history…

I have been a soccer player since I was 8 years old (will be 43 on Sept. 1st). In the past year/two years I have suffered many soft tissue/muscle injuries that have landed me in physical therapy. I have been diagnosed with patella femoral syndrome (where the knee cap shifts the wrong way) and this past Dec. I ended with patella tendonitis on the same knee. An MRI was done and has been concluded I have basically no cartilage in that knee; a large difference form the MRI I had done 2 years prior.

The physical therapist believes that the tendonitis came from walking improperly due to major calve cramps in my legs. The tendonitis is gone but my knee is very tender still; I cannot kneel on my knee at all it hurts very bad. The physical therapist did a resistance test on my muscles in my legs to test my strength….I had NONE I was embarrassed to admit I was a soccer player!

I am still having the calve cramps which are very bad; I cannot even jog ½ of the soccer field before I am done and in awful pain. These are not Charlie horse types of cramps more like “knots”; my muscle feels like a solid rock non-stop. Recently, I started doing trigger point therapy (on myself) to my calves with a tennis ball. I can find roughly 10-15 knots in my calves and pretty much every day and when I put pressure on them with the tennis ball it hurts so bad I want to scream and cry yet when I am done I do feel a little relief as if the muscle has loosened “some”.

I drink 8-12 glasses of water a day and have added calcium, magnesium, and vitamin D to my daily regimen and have been doing this for almost 30 days. I went the doctor a few weeks back and saw the PA he was stumped and suggested I take iron as well. I thought what the heck maybe it would help my REALLY bad bowels now that I added the other supplements.

Frustrated with this issue going on I started to look into what may be going on with my body and began looking at FM. Since looking over the symptoms list I have found I suffer from MANY of the items listed; however, I don’t have the “don’t dare touch me” one. Basically, I ache everywhere but I would have to say the pain levels are not off the charts that I can’t continue on daily but I am very tried and sore in certain areas of my body (legs, neck, shoulders, lower back, headaches/migraines) nearly every day….I do have some good/great days where I don’t have any pain (except the calves that is every day for more than 6 months).

So my main questions are:

How do I discuss the possibility of FM with my doctor without sounding like a hypochondriac?

Is it normal to have the muscle aches and pains without being in unbearable pain?

When the FM pressure point (sorry forgot what that test was called) test is done are the points normally very painful when pressure is applied or just very tender?

**I am hypothyroid; I have Hashimoto’s disease and have had half my thyroid removed. I just had my thyroid and TSH levels checked and were all good.

I never correlated all these symptoms I have to anything before because I didn't realize they could all add up to something. After reading the symptoms it was like wow.....things make sense. A light bulb went off.....now I realize I may not even have FM but I have something and need help finding a solution..... How do I address all my symptoms without bringing in the laundry list? Recommendations??

My symptoms:
PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.

FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.

SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns " feels like I haven't slept." (wake up 5 or more times a night to urinate; most times really not much there)

DEPRESSION- mild; haven’t been taking my meds; don’t feel the need

ANXIETY- may include panic attacks; again haven’t been taking my meds.

PERSONALITY CHANGES- usually a worsening of a previous tendency.

MOOD SWINGS (don’t like to admit this one but the hubby says I do)

SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.- Mostly In my hands

HEADACHES- tension and or migraine.

FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.

DYSTONIA- stiff muscles due to involuntary contracture.

BURNING SENSATIONS- in my upper legs near my hips

LIGHT HEADEDNESS- "Fibro Fog", spaced out, cloudy.

MORNING STIFFNESS

EASY BRUISING

NEUROGENIC INFLAMMATION- rashes, may be severe itching. I have --- Dermatographia.

DISEQUILIBRIUM- Vertigo; occasional episodes

MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.

PHOTOPHOBIA- Intolerance of bright lights.

ALTERATION OF TASTE, SMELL and HEARING.

DECRESED PAINFUL SOUND THRESHOLD.

INTOLERANCE OF ALCOHOL---Not sure I don’t drink because I don’t like it

ENHANCEMENT OF MEDICATION SIDE EFFECTS

WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants

RESTLESS LEGS

SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)

SUB-NORMAL TEMPERATURE

NIGHT SWEATS.

HEART PALPITATIONS- occasionally, mostly with anxiety

BREATHING DIFFICULTIES----recently had to start using an inhaler with soccer and or exercise (past 2-3 years).

MUSCLE SPASM- twitching.

PELVIC PAIN.

ABDOMINAL WALL PAIN.

DRY EYES AND MOUTH.

TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone. (Not sure, very well could be)

RAYNAUD'S- like symptoms.

VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.

PLANTAR ARCH-or heel pain. Exacerbated in FM.


Thank you very much!

Post Edited (icesk8ermom) : 8/22/2012 7:40:46 PM (GMT-6)

Posted 8/23/2012 3:17 AM (GMT 0)
Print your post and take it with you to your appointment. there may be many of your symptoms that she is not aware of yet. Demand to be taken seriously.
Posted 8/23/2012 4:54 AM (GMT 0)
Hello, icesk8ermom! Glad you found your way here, though sorry, of course, that you need to.

I honestly think that a doctor would be overwhelmed if you took in that very long list with every single symptom on it. I would concentrate on the major problems, the general story....otherwise, the details might overshadow the big picture. (I have a wonderful doctor, who spent quite a while with me on my 1st visit, but even after 20+ years, he doesn't know every single symptom I have. There just isn't time!)

In this day and age, any doctor who doesn't believe in Fibro is frankly not worth your time and money. You may not have it, but if your doctor won't even entertain the possibility, with all the problems you're having, you need to be looking at other doctors. The fact that you are trying to educate yourself before your appointment is a good thing, not a sign of hypochondria...

As far as your pain not being unbearable, I don't really know - it was always and is still my biggest problem, but not everyone's.

Good luck! Let us know what happens...

Debbie
Posted 8/23/2012 9:13 AM (GMT 0)
Please let me know about your appt..I am in a similar situation as you are..I have not been diagnosed with FM but am suspecting that it may be the culmination of all of the symptoms I'm experiencing as well..while your calves are your main problems, mine are upper back shoulders and neck but I have been experiencing more widespread pain everywhere especially hips jaw and heels..I too don't want to be perceived as a hypochondriac but want to get to the bottom of this..any input would be appreciated I go to my dr Sept 12..thanks..Beth
Posted 8/23/2012 10:29 AM (GMT 0)
Welcome, Ice!

Some doctors are knowledgeable about fibro and others are not. I've found rheumatologists, and it's also been agreed in this forum, are great for diagnosing fibro. If you find out today that your dr. is knowlegeable about fibro, I would ask him or her if it's okay to discuss everything briefly on your list.

Now to everything else you've asked. I, too, have lost strength in the sense that doing out of my comfort zone like lifting a little too much greatly increases my pain. At this point in your life, if need be, I would suggest that you stop overdoing and pushing yourself so hard physically. We have to listen to our bodies.

Are you taking a multivitamin? For IBS I try to controll it with diet. We have to eat plenty of healthy fiber.

I don't have the "don't touch me syndrome" but if someone touched me too aggressively that would hurt.

Fatigue, I try to control with diet and supplements and getting out and walking in the fresh air.

I have sleep apnea. I take supplements to help me deal with it and try to go to bed at the same time. I also have to eat healthy otherwise I have even more difficulty trying to sleep.

Anxiety-I find if I eat or drink what I shouldn't eat or drink like sugar and caffiene or trying some new med my anxiety increases. Sometimes I feel like I'm visibly shaking.

Depression-I try to control that again with eating healthy and walking. They say exercise is very good for depression issues. I also do twice a day stretches for my fibro.

Mood swings--Did you know there are mood foods? The bad foods can greatly affect our moods like sugar, caffiene, high fat foods, and unhealthy carbs. Then there are also the good mood foods like fruits, vegetables, healthy proteins. Try not to eat processed foods.

My hands swell if I eat too much salt which I try not to do.

Headaches, a knowledgeable chiropractor who understands fibro might be able to help you with your headaches. Mine gives me some relief. Eating bad foods can bring on headaches.

Burning sensations--if I eat improperly that brings on my imflammation or if I overdo.

Morning stiffness--I lay on my side and sleep with a body pillow to keep my spine aligned.

Alteration of senses--yes, it feels like an invisible glove.

I can no longer can tolerate certain sounds.

Medication side effects--my rheumy has told me that people with fibro are usually medication sensitive. I definitely have this.

Restless legs, yes. I try to control it with not sitting too long.

Weight, it's difficult to lose weight. I've lost 20 lbs in the last year but have been stuck for a while. The only way I can lose weight is by eating healthy and walking a couple times a day. But I can't walk too long of distance.

Night sweats, yes, I find that comes with eating unhealthy for me.

Muscle spasm, I had that from taking gabapentin then took myself off.

Dry eyes and mouth--yes. I hold a warm wet washcloth to my eyes for 5 minutes x2 a day and then put in artificial tears drops. Don't use visine--it has chemicals.

Heel pain--make sure you're wearing supportive shoes with good arch support.

Good luck to you. Let us know how it goes.
Posted 8/23/2012 11:25 AM (GMT 0)
Though I don't have all the same symptoms as you do, I share many.  Even though my family doctor is great and is willing to sit down and talk over symptoms as long as needed, you may benefit from a referral to a neurologist. 

My symptoms worsened greatly in 2003, so that's when I first saw a neurologist.  He was considered an expert, and yes, he was thorough.  However, despite many tests, nothing was conclusive.  His best educated 'guess' was that I not only have fibromyalgia but also something else going on--possibly cerebral palsy, and I may have had it all my life!  He told me at first he thought I either had ALS or MS.  Also, he mentioned whatever I have, it may be something time will eventually show.  It is now 9 years later, and I have gotten a little more achy and pain, but no major changes. But I do think that age plays a part and our bodies just get more tired!

Just wondering too, if you could discuss your potassium level with your doctor.  I am very prone to achy legs and cramping of my legs, feet, and toes, and I take a potassium tablet.  I also put soap under the bed sheets, and I must say that things have been better. (Weird, huh?) If you do an online search, there's lots of people who agree! :)

I battled fatigue big time this past winter.  Then I decided I was eating too much sugar.  I now have only a small amount of sugar a day.  That seems to help the fatigue a bit.  I also try not to sleep during the day.  I do take a short rest by just relaxing on my bed and reading or saying some prayers, which is soothing.

Like you, I have bad bowels.  I developed this 19 years ago, a couple months after my youngest was born. Had to take Elavil for years to dry out my system, as I was living in the bathroom and could rarely leave the house.  I had an upper GI endoscopy and also a colonoscopy and was told my problem is a motility issue.  I try to avoid fats and eat small amounts of food at a time.  I often need less fibrous foods or I'm in the bathroom too often.

My pain goes from 'just there' to almost unbearable, and everything inbetween.

Chamomile tea before bedtime has helped my sleep. Also, I stay off the computer and never watch TV.  I read a few pages of a good book to calm me down, then I read a little from the Bible and read some other prayers.  This all helps me get ready to sleep, though I must admit I sometimes lie awake for a while.  We lived in troubled times, and I think it's hard not to think about the future without a hint of anxiety.  I'm working on that, though! 

You might want to check with your doctor about taking something like CalmTabs from Puritan's Pride.  It contains an herbal preparation, including valarian, passion flower, hops, etc.  In researching herbal alternatives to Flexeril, I was surprised to find some of these herbs were mentioned, so it may be helpful for stiffness, too. But yes--always check with your doctor.  Herbal preparations are really another form of medication.

Best of luck!  And I'd suggest shopping around a bit for a doctor willing to listen.

Posted 8/23/2012 5:52 PM (GMT 0)

Thank you everyone for your replies; I really appreciate them! I agree I don’t think I can take my whole list of symptoms to him today. I do feel that would make me look like a hypochondriac; even though I don’t go in that often. Although I battle everything on that list they all are not daily battles as some of them come and go. For now my main issues/ complaints are definitely my calve cramps and my overall body aches and sleep deprivation/fatigue. I do feel like the cramping in my calves is not as intense the past 2 days but now because they aren’t as bad I really feel all the other aches and pains. Like I now feel the lower leg cramping starting to travel into my upper legs; front and back, my neck, shoulders and lower back are pretty bad as well.

 

I LOVE my heating pad and can’t go to bed without it! The problem I run into is which part of my body gets it? The legs…lower or upper, neck, shoulders, lower back or my feet because they are like ice cubes?? Often I start on one area and move it around until I finally fall asleep. The next problem is then I break out in sweats and struggle falling back asleep.

 

BTW…..I have been trying to exercise (because the orthopedic told me I needed to build my “core” to help with my muscle weakness, balance, lower back pain etc) as well as eating healthy, limiting my sugar intake, bad fats, carbs etc. I only drink sodas 1 or 2 times a week now, I only have 1 cup; if that, of coffee a day in the morning. After 7, almost 8 weeks I have only lost 5 lbs. I do not take a multi-vitamin (I know someone asked that) I haven’t been able to find one that agrees with me yet.

 

Well…I haven’t really decide how I am going to address this with him I just don’t want to come off that I am self-diagnosing. I am tired of aching, hurting, not sleeping and feel like a walking zombie (just as I assume many of you have been before) and just want some answers. Since I have an HMO I cannot just go to a rheumatologist I will have to go to my GP first and see what he says; all I can do is ask!

 

I was thinking I would mention that a friend with FM suggested (not really….lol) I be checked for FM because I have many of the symptoms she has and go from there…??

 

I will be leaving shortly for my appointment and will let you know what happens when I return.

 

Thanks a bunch!

Posted 8/23/2012 6:09 PM (GMT 0)
http://www.walmart.com/search/search-ng.do?search_query=heating+pad (hope it is okay to post links here??)

Coincidence: I was just researching heating pads this week and found these at Wal-Mart. Some are king-sized, which is the size I hope to buy. Yes--they warm more than one body part, which is what we all likely need!
Posted 8/23/2012 8:10 PM (GMT 0)
That electric spa wrap sounds great, Luvzminis!

Icesk8ermom, Some of your symptoms sound like lupus, too. Ask for an ANA test, too.
Posted 8/23/2012 9:08 PM (GMT 0)

Back from doctor……

 

First…..Thank you for the recommendations on the heating pads; however, I think I may have the largest size as I have quite the array of heating pads! One can only plug so many things into the outlet before it becomes a safety hazard. J I even have thermophore one for $70.00! That one gets REALLY hot and is moist heat; it so hot that it doesn’t even have a timer on it you have to hold the button so you don’t fall asleep with it on. However…..there are always ways around that….like shipping tape or duct tape! The problem I have with the one I am currently using is it is large but only if you use it long ways as in the length of your body but then it doesn’t really get the aches on the sides as well and when you want your neck down to your very very lower back it doesn’t quite reach. I still will check these out as it looks like there is now a plus size and a king size one that could be a tad bit larger than mine….Thanks!

 

OK, I went in and told him that I am having the calve cramping which is non-stop all day since about December but that I also have body aches and pains all over and very fatigued and  didn’t sleep well. Explain what supplements I am taking and that I am drinking plenty of water so I didn’t think that dehydration was an issue. He asked me to explain where else my body aches and pains where which I explained. He also asked other questions that prompted me to tell him about a few other symptoms like IBS, swelling (or what felt like swelling) in my hands, the sunburn/sensitive feeling on certain areas of my skin and the sensitive hip area that hurts when I sleep sometimes. I really didn’t pull go over everything because I just have the fear of being labeled a hypochondriac!  

 

He is a very quiet man but is very good IMO; he took lots of notes and order a ton of labs. He stated that he wanted to do a battery of labs including one for lupus and RA as I have Hashimoto’s disease which is an autoimmune disease and that once you have one you “tend” (not always) to get others. So I will fast and do my labs….I go back Sept 13th. In the meantime not much help…

 

BTW…..the ANA panel was on there but he crossed it out; what is that one for? He is what he ordered:

 

Comp Metab Panel

CBC

CPK

ESR (sed rate)

Ferritin

Glyco-Hemoglobin

LIPID panel

Analyse (lupus)

Iron & TIBC

Magnesium

Rheumatoid factor

B12

Vitamin D

UA w/cult

Occult Blood  x 3

Auk CCP antibodies (?not sure the spelling that was hand written)

 

Will keep you posted

 

Thanks again……

Posted 8/23/2012 9:23 PM (GMT 0)
ANA is to test for lupus or other autoimmune diseases.
Posted 8/23/2012 11:01 PM (GMT 0)
OK, I think he may have covered that because although he crossed out ANA he circled.....Analyse (lupus)

Is that the same thing?
Posted 8/24/2012 12:29 AM (GMT 0)
I think so. He might have them check it also.
Posted 8/24/2012 5:08 AM (GMT 0)
Sleep problems, ask doctor for a referral to a sleep study to check for things like UARS, Apenia (sp) and have them figure out your sleep

All that pain - Chiropractor, medical massage, accupuncture

Fibromyalgia - Rheumy

Hashimato's - Endo

Knee- Need a knee replacement

Ask Primary doctor for full CBC, Chem 20, RBC
Ask Rheumy for ANCA, CBC, Chem 20 and tell him what things for your suspected fibro as well as all your symptoms


Possible you have an autoimmune disorder

For anxiety, don't sweat it. Just relax
Posted 8/24/2012 6:37 AM (GMT 0)
As a retired nurse I think you should give him a few more visits. The labs he is doing is suffient and a start. He is trying to rule out arthritis, lupus, inflammation, anemia, blood in the stool, and etc. I think he done well to start off with. I bet he will get to fibro, but trying to make sure he is not missing something since the symptoms are so similiar to other auto immune. He trying to see if your fatigue is caused by low vitamins, anemic or bleeding from the stools. Give him a chance. I could go on and on what other things he is looking for. Sounds like he knows what he is doing.

I wouldn't being asking for a sleep study or other major test as this time. He has to start some where and it doesn't start with a sleep study.

Post Edited (ak angel) : 8/24/2012 12:41:48 AM (GMT-6)

Posted 8/24/2012 3:17 PM (GMT 0)
Hi, Icesk8er, and welcome!  I'm glad you had a good doctor's appointment yesterday.  I'm sorry I'm just getting to this now but I was gone most of yesterday. 

 

Your doctor does sound very good.  He is checking other illnesses that have many of these same symptoms.  There are no real tests for fibro so they go this route first. 

 

The ANA is the antinuclear antibody test.  It tests for inflammation.  It can show positive if you have any inflammation in your body...a cold, a cut, etc. so they don't go totally on this test.  You could be perfectly healthy and still show positive on this.  You could be positive this time and negative the next time.  But, this, in conjunction to other tests can help tell if you have an autoimmune problem.  I went through this last winter.  I'm a walking inflammatory factory!  LOL  Here is a link about the ANA test to help you understand it better.

 

http://labtestsonline.org/understanding/analytes/ana/tab/test

We have pain but it isn't always horrible pain.  We need to get in control of the pain.  I have done this through mainly over the counter things, supplements, gentle exercise, pacing myself, and keeping a  positive outlook on life.  I continue to live my life and not let fibro choose the way I live.  I find ways to work around this illness so consequently I have had a full and enjoyable life in spite of it.  You can too!

 

Be sure to read Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there and you just might see yourself there, too.

 

I'm looking forward to getting to know you better.  Don't be surprised if all your tests come back just fine!  This has happened to most of us.  That only means you don't have those other illnesses and you most likely have fibro.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

 

By the way, please try to use the "normal" size font for your posts.  A couple of them are huge, hard to read, and its like you are yelling at us.  I know you aren't but just wanted to mention this.  Thanks in advance.

 

Sherrine

 

 

 

Posted 8/24/2012 7:37 PM (GMT 0)
Can I ask what the purpose is of getting the ANA test? If it were to show positive, what could be done?

Thanks!
Posted 8/24/2012 8:00 PM (GMT 0)
Welcome to the fibro family icesk8ermom!

I'm a little late but you should definitely take everyone's advice here, as I agree. Take every single symptom to your doctor, no matter how big or small and demand to be taken seriously. Fibromyalgia is more well known now, than ever. You just have to keep pushing forward with doctors because your health is the most important thing you have, and dear you should be enjoying life. Believe me, we all know it's hard.. but we are ALWAYS here to support you in every step of the way.
Posted 8/25/2012 2:48 AM (GMT 0)
Thanks everyone! I feel pretty confident in my doctor.... I found him a few years back when I went to urgent care in major pain for pain meds. Before I could even explain why I was there he asked about my enlarged thyroid which I had to my normal gp for multiple times and never had anything done because my thyroid panel always came back normal....duh I had Hashimotos which normally doesn't show up on a basic panel, I needed the antibody test. He immediately ordered a ultra sound. As it turned out it was enlarged and had to be removed! My other gp wouldn't even order me pain meds....I turned out to have a spinal fusion a few weeks later from bulging disks along with one that was broken and pushing a nerve back into my spinal cord.

I do believe he is trying to rule everything out he possibly can....just trying to be patient is hard. I oddly did feel a little better yesterday when I went as well as today, at least my calves do! I will definitely keep you all informed as I find things out....I sadly am prepared for this it be a fairly long drawn out process.

****Sorry about the large font (caps), I copied and pasted because I was too lazy to re-type it.

Enjoy your weekend everyone.
Posted 8/25/2012 1:14 PM (GMT 0)
Your doctor does sound good and is being quite thorough.  That's what you want.  The answer is there but sometimes it takes some hunting to find it.

 

Ahhhh...copying and pasting!  You aren't the only one who has had large print font on the forum recently and I couldn't figure it out.  I sometimes will type something and then copy and paste it but it doesn't do that for me.  Oh, well....guess it's still a mystery!  Anyway, glad you are here on HealingWell.  We have a great group of people who love to help one another and, as a bonus, we care about each other, too.  You'll like it here.

 

Almost...the ANA is just one of many diagnostic tools they use.  But, if it's really high and other tests are too, then a definitive diagnosis can be given, I think.  You might ask your doctor about this if you are really curious.

 

Sherrine

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