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Old 03-12-2005, 04:55 AM   #1
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Hi, Im new to Fibro board would like advice please

Hi,

Ijust wanted to drop by and ask for some advice and introduce mysel. My name is Mike. I am a 32 year old male from the UK. I was previously healthy until 2 years ago when I started getting intermittent feelings of face pressure, feeling stupid?, and then the dizziness started when leaning forward. This would come and go a few times in a day. Then I had a good period from Feb 04 to Oct 04 and it's back. It's hasn't gone away since. I am the sort of person who likes to be in control and get answers. This is making me worse as nobody knows whats wrong with me. I've got a 2 year old Boy and a great Wife. I feel as if my life is OVER.

My other symptoms are :


Waking up 06:00 every morning with broken sleep (neither awake/asleep from 6am - strange thoughts run through mind automatically)
Vivid dreams and nightmares every night
Random Episodic Anxiety
Random Episodic Panic Attacks
Random Episodic Depression
Crying outbusts for no reason
Extremely sore neck and shoulders (worse when in bed)
Sore Leg calf muscles and knee cap joints (worse at rest)
Burning Eyes but no redness
Puffy Eyes
Thick bushy eyebrows
Hoarse voice (loss of lower ranges)
Discolored phlegm (sputum) - worse when lying horizontal
Tinnitus
Dizziness
Carpal Tunnel (mild)
Clumsiness
Short term memory loss
TMJ
Face fullness episodic jaw pressure
Forehead pressure
Random short headaches
Neck pain/forehead pressure worse when lying down with pressure on back of head.
Intolerence to Antidepressants of SSRI kind (can tolorate Tricyclics but dont do anything)
Nasal openings swell and extremely painfull to touch for days (one sided)
Post nasal drip
Periodic Belching
Periodic Excessive Flatulance
Cant walk into large buildings (mall's, supermarkets etc)
Cant tolerate excessive loud noise

The worst one of all is that I cant seem to talk to anyone. I just cant seem to stay focused on someones face, I get very nervous (this is the complete opposite of the way I used to be - I used to DJ in front of 1000+ people), and I feel the need to run away. This feels like more than a panic attack.

If I get worked up about an important appointment or anything related to nerves, I get pressure in my forehead, my jaw goes stiff and hurts, and I feel stupid.

I have had 2 MRI's of brain, cervical spine, thyroid and adrenals checked (still under investigation). All blood tests done, all normal except slightly elevated ALT liver. I recently had caloric (ENT) test done and failed on one side (vestibular damage?).

I am not convinced as I suffer daily with epesodic dizziness, horrible headaches in forehead, stiff sore neck and top of shoulders. I am now very clumsy and extremely forgetfull (short term memory is terrible!).

I can' stop thinking about how I feel every day. Symptoms and illness is CONSTANTLY running through my mind. I can't seem to see any future as It seems like I've been living with this horrible condition for just under 2 years. I COULDN'T STAND THE THOUGHT OF LIVING THE REST OF MY LIFE LIKE THIS.

Will it get better? I know im Depressed (this started a couple of months after the illness so I put it down to secondary depression NOT primary. YES, I am anxious and cant go a day without wondering what I've got!, but isn't this normal).

Have I got Fibro, have I got CFS, have I got a vestibular disorder with anxiety and depression (and sleep deprevation is giving me pains? my legs seem to hurt alot, I cannot stand more than 5 minutes without pain). I lie in bed with my feet crossed, my neck and back aches, I wake up at 6am constantly (never used to!).

Doctors just want to give me antidepressants. I've tried about 6 now and have SERVERE reactions after just one tablet.

All I am taking at the moment is SJWort, multivits and Tylenol PM for pain (horrible headaches the next day though).

Any advice greatly appreciated.

Take care. So good to read all of your posts.

Mike.

 
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Old 03-12-2005, 11:44 AM   #2
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apriltones HB User
Re: Hi, Im new to Fibro board would like advice please

hi mike, welcome! i had reaction to mine, most people do. stick with them and most of time they dissapear. what tablets have you tried? xx

 
Old 03-12-2005, 12:42 PM   #3
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Re: Hi, Im new to Fibro board would like advice please

Yes, most anti-depressants take time for the side effects to wear off. I had to go through quite a few to find the ones I'm on now. Have you been diagnosed with fibro, or wondering if you have it? Either way, you should bring up the possibility to your doctor and get a referral to a rheumatologist. A lot of your symptoms are similar to mine, but fibro symptoms can mimick so many other things, you need to get checked out thoroughly.

Take Care Mike.

 
Old 03-12-2005, 12:51 PM   #4
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Re: Hi, Im new to Fibro board would like advice please

Mike,
Many of your symptoms you have sound so familiar, tho, the doctors have to rule out everything else before there is a diagnose of Fibro (FMS). Sleep disturbance was one of the primary issues I had when I started going to the doctor...every morning I woke up unrefreshed and more and more fatigued as the weeks and months went by. I also had waves of dizziness, I originally put it to my hormones being out of wack.

The SSNRI named Cymbalta has worked for me, however It may not work for men, there is resarch about it. Have you researched, 'newest treatment for Men with FMS or CFS' on a search engine? You may find documentation to share with your doctors.

What have been the side effects of the meds you have tried?

Also, some people fear anti-depressants because of lack of knowledge, I did at first. I doubted my doctor, thinking she was just giving me them to soothe me. Boy, was I wrong! When I researched the treatment protocol, I found out that they have been given as a protocol for treatment for years. And now, its known the FMS is a illness that causes the Central Nervous System to malfunction in turn it effects all of the body's systems.

Certain Anti-depressants help the Seritonin and Norenephrine levels process better which is suppose to give us more energy and help in the pain tolerance. (but, we may say its not working because in our mind it is suppose to be the magic pill and all our symptoms go away.)

I have found I have to be patient, give the meds time to build up in my body. I also take other meds, supplements, and natural hormones which help to relieve different symptoms, a change of diet for the hypoglycemia issue, and PT-pool & Massage therapy for the other ones.

I take trazodone at night for sleep, with time it has allowed me to get to the deep level of sleep most of the time, there are still times when I struggle but I have seen improvement over all.

I hope that there are some guys out there who have found help and improvement, who can share their journey so we can pass on the news.

I have learned that this is probably one of the best eras to have this dx, there is treatment available out there, we can learn about, we can share what we learn with our PCP, or seek the doctors who can help you in your area by searching on the internet, I look for medical reseach documents.

Treatment is not cheap, but nor is losing our life. I have been able to keep my financial service rep position at work, tho, I can only work 32 hours a week right now. If I keep improving I hope to be able to work fulltime again in the future. I still have flare-ups and days when the symptoms are turned up, but there also are days of reprievement, where I am almost my old self again.

Mike, welcome to this site, I hope that you will find hope and answers to some of your questions here. More than anything, I pray that through this journey you will find acceptance of this 'thorn in my flesh' and new balance of priorities, a life that is slower paced, more disaplined, and of deeper faith.

A Fibro friend in the USA,
Janíce aka: uvmom

 
Old 03-12-2005, 06:26 PM   #5
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Re: Hi, Im new to Fibro board would like advice please

Yes Mike it will get better. Because you will get better at handling it emotionally and mentally when you have a better understanding of what illness you have and how best to have it treated. You have the responsibility of eating right, getting some kind of exercise if you can, drink lots of water, check out the supplements info at the top of this fibromyalgia board. If you do have fibromyalgia, reach out to other people for support. As you begin doing all of these things, your fear will get smaller. Thats how it has been for me. I was freaked out for 3 solid months and had severe depression. And I am so much better know that I am dx'ed, had treatments with a pain mgm't doc, presently see a chiropractor and rheumi. And I have read up on fms and chronic myofascial pain--which is one of my most severe symptoms, and I know what to do when i flare. I hope that you feel better soon.

You are in my prayers
Donna USA Illinois

For God did not give us a spirit of fear, but one of power and of love and of a sound mind 2Tim 1:7

 
Old 03-12-2005, 08:18 PM   #6
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Re: Hi, Im new to Fibro board would like advice please

Hello Mike,

I share many many symptoms. I too have fibro and a lovely inner ear disorder that makes life complete crap alot of the time.

It's like you are the male version of me. God help us all !! You must have humor or you will sit and weep incessantly like I do. I try to control it, but sometimes I just cannot.

I have horrible tinnitus and hyperaclusis. This really peeves me, as I have a huge love of music, loud music. I take my chances. If I love the song, I turn it up, knowing full well that I will more than likely pay for it with a migraine which then brings on the blurry eyes, dizziness and anxiety.

Oh sure, I may sound just fine right now, as I am only having a mild flare today, and do not have PMS (as if you need to know that). When I have the PMS, life is not livable because it flares every single symptom I have with BOTH disorders, and I live on the couch for 10 days.

You are not alone my new friend. The people on this board will help get you through your toughest days. Sure, I can count on my husband, and even though he is astoundingly sympathetic and supportive, he is not "one of us".

Don't freak, but if you do, just jump right back on and write again. I'll be here. We're all trying to "live" with this monster. I don't want to live the rest of my life like this either. And so, I'm getting very assertive with my doctors. But good things do come from this. You make great friends, friends who care. They do, really! Now, you've met one, you can call me SL and I'm 36.

(((((((MIKE))))))))))))))

Love,

SL

 
Old 03-13-2005, 02:09 AM   #7
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mletters HB User
Re: Hi, Im new to Fibro board would like advice please

I just want to say a big THANKYOU to all of you for your personal replies. I feel so much better knowing that there is support and understanding out there. I guess I'm just so down at the momen and frustrated with Doctors and the medical profession. They give you the standard 10 minute appointment, brush off all your symptoms as if they don't matter (that's when I can remember half of my symptoms when I go in). What with the bad memory and dizziness/strage feelings when looking at people this seems to take over me. I won't let it!

Things that are true about my condition?

I am not dizzy First thing in the morning. Always ok for first 30-60 minutes. This only seems to start when up and around.

I get random pains in my legs/calfs which is a dull? ache not stabbing pain.

Every day my armpits are drenched with sweat for no apparent reason!

Sudden Head movement seems to make the dizziness/disequilibrium worse

I feel better when lying down/still

I seem to have a forward head posture (Just looking in the mirror side on, my head is out of allignment with the rest of my body). This alone can cause other bodily symptoms apparently.

Whenever I turn over in bed, I get upper back and neck pain. The back of my neck feels tender to touch.

My jaw sometimes goes stiff (especially with stress), but doesn't hurt. Also my jaw doesn't open evenly.

I have a limited range of left/right movement when turning my head.

I have a hoarse voice and always seem to have excess sputum (phlegm) - possibly sinus related?

All of my joints click recently. Even if I'm just moving my leg or lifting an arm then C.R.A.C.K. Freaks me out! I don't get pain with it so should I worry?

Anxiety :- This is possibly one of the worst symptoms. EVERY day I think about symptoms (becase of the way I feel). I panic about the future. I start t panic about loosing my job, thinking I could never pass an interview the way I feel and because I can't seem to talk to people lately. Perhaps C.B.T might help?

Recently I had vestibular testing and although my hearing is normal (slight loss in left ear - which funny enough is the tinnitus side), I failed the caloric test (they had to use AIR as I am so sensitive to any water in my ears. Last time I went swimming, I got water trapped and freaked out. I could hear water squishing in my ear when I walked. Luckily it disappeared over night. That's how sensitized this condition has made me. I seem to check for EVERY symptom.

I don't know right now If I have a Central Nervous System disorder, Vestibular disorder or FMS. The CFS dx I was given just DOESN'T fit. I don't have fatigue, I am working full time, can go out at night (although i don't feel like it with dizziness, depression etc.), I can go for a 2-3 mile walk with no problems.

Sorry for the long post folks, just wanted to see if anyone else can relate to these statements?

Oh yes, and the biggest symptom of all is FEAR. Fear that I am going to get worse, Fear that I won't be able to support my 2 year old and my wife, Fear that I have a serious illness that hasn't yet been found. I just seem to Fear EVERYTHING lately. Plain Anxiety or related to the condition? Could depresion and anxiety be due to CNS disorder?

Hope you are having a better day today. The sun is shining right now, and I know I feel better in the sun. We don't get alot of it here in dull old U.K :-( I would like to move to USA but don't think I could aford to be sick over there!

XXX MIKE

 
Old 03-13-2005, 07:37 AM   #8
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Re: Hi, Im new to Fibro board would like advice please

hey mike, sorry that you are feeling so bad. the fortunate thing though is that you found this web site and found people who actually care and are there through the tough times. i am 29 yrs old and a mother of a 2 and a 5 yr old. fibro, depression and anxiety do make it tough when you have a family. whenever i go to my doctors appt. i usually make a list of my symptoms and problems that i am having. sometimes i even write down the questions i want to ask. this really helps because i forget as soon as i walk in the door to the doctors office. you should try an anti depressent again and give it time to work and like the other postees put give the side effects time to subside. i take 2 diff. anti dep. meds. effexor and lexapro. they have both really helped me with all those strange feelings and thoughts like you said you have. i think once you have that taken care of you can focus on your pains and maybe the anti dep. will take some away because you won't be worried about some of them all the time. as soon as you get a DX you probably will feel better, i know i did and it wasn't all in my head. that took alot of preasure off my back. well i hope all my rambling on has helped some. lol!! its hard to type what i am thinking sometimes. well keep in touch and keep us posted

robin (girl75) from USA

P.S. welcome to the board!!!!!!

 
Old 03-13-2005, 08:34 AM   #9
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Re: Hi, Im new to Fibro board would like advice please

Hi again Mike,

Have you had your ears checked? I had severe dizziness that was caused by fluid in my middle ear. It's viral so they can't really do anything about it but it has faded and lo and behold, the dizziness is subsiding. Anxiety can also cause dizziness and excessive sweating. I found when I first start on an anti-depressant, I sweat a lot for the first few days. Your jaw could be TMJ, which a lot of us have (myself included). I wear a mouthguard at night and it helps. I click and creak like an old house whenever I move but don't worry if there is no pain. You should really try to stick with an anti-anxiety/anti-depressant. I'm on Zoloft and Effexor. They are both helping with depression and anxiety, thus making the pain better.
Have you looked into supplements & vitamins? What about therapy? I go for chiro, acupuncture and massage. All help a lot.

Post whenever you want, with whatever questions you have.

KC (from Canada, age 24)

 
Old 03-14-2005, 04:48 AM   #10
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Re: Hi, Im new to Fibro board would like advice please

Hi,

Just want to say thankyou for all your replies so far. You've no idea what a comfort it is to talk to so many understanding people after you've done rounds with doctors and specialists? (I use the term loosely!)

I've had my ears checked by 2 ENT. There is a slight loss in the affected ear (Tinnitus) but nothing of note. Also when they did a Caloric test (putting Air/Water in your ear), nothing happened in this side (you are supposed to go dizzy - I did with the other side!)

I've also tried everything under the sun (Accupuncture, Accumassage, Chiropractor/Osteopath, Essential oil massage, Spirutual healing, de-tox, Vitamins & Minteral therapy, Batch remedy, Homeopathy. The only things that have worked with temporary releivement is the Osteopath and Accupuncture.

I'm now trying to see a Cranial Osteo to see if my problem is spine/posture related as I have servere upper back pain, jaw stiffness, headaches that start in the back of the head and radiate over to forehead.

As I have servere symptoms when trying to talk to people (adrenaline spikes, feel dizzy, jaw goes stiff, feel stupid), I'm also being investigated by an Endocrinologist. Maybe this thing could be something like a Pituitary Tumour that's been missed (although 2 x brain MRI's normal). Could this thing be missed if they weren't specifically looking at pituitary gland I wonder?

My next investigations are going to be :

Endocrinology
Cranial Chiropractic/Ostepath
Neurologist (possible Chiari Malformation ACM I think?).

It's so easy for everyone to dismiss all of your symptoms and just tell me to get on with my life and accept things. It's VERY hard when you're the person living with it! My symptoms and thoughts seem like they switch themselves on automatically every day. I don't have a day where I'm either Symptom free or can forget about it!

Here's hoping for better days!

Thankyou and take care,

Mike XXX

 
Old 03-14-2005, 03:03 PM   #11
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SuzU HB User
Re: Hi, Im new to Fibro board would like advice please

Mike-
You might want to check out the inner ear disorders board.
Some folks there describe getting anxiety attacks as a result of a viral labyrinthitis. The symptoms can last for a few months to a few years (but this is extremely rare...) There is also therapy that you can do to help your body adapt to the dizziness.

Also, consider a neuro-otologist as one of the specialties you want to see. My friend had a girlfriend who had been dizzy for years and couldn't get to the bottom of it, of course she went the same route as you and came up emtpy.

It turns out she went to a neuro-otologist and was dx'ed with Cipro toxicity. There are other meds that can cause these symptoms too, but not all docs know about them. If you have ever taken Cipro, you might want to check into this.

A tumor would absolutely show up on an MRI, especially if you have had more than one over time. Was it an open or closed MRI, with or without contrast? You can always get a copy of your films and ask for a second opinion if you aren't comfortable.

Finally, anxiety can soooo worsen all of the symptoms you are describing. I have the same problem, I worry and fret over the symptoms and make them all worse!

Just remember there are treatments for all of your symptoms and it is just a matter of narrowing down a diagnosis. It sounds like you ruled out all of the bad stuff already.

Blessings to you-hope you are feeling better soon!

 
Old 03-14-2005, 07:24 PM   #12
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SuzU HB User
Re: Hi, Im new to Fibro board would like advice please

Oh-
and just to add on-the chiari or acm would have shown up on your brain MRI as well.

You might want to get a cervical mri as some (not all...) of your symptoms could be caused by neck injury-impingements, etc.

 
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