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Charmed_one

Member
Joined
May 12, 2014
Messages
16
Reason
DX FIBRO
Diagnosis
11/2013
Country
CA
State
ON
Hi everyone, I have been diagnosed with Fibro about a year ago and have a history of anxiety, and depression. I have had weird symptoms my whole life and now I feel debilitated. I used to be a weight lifter/fitness enthusiast who always worked out. Now I can hardly get to the store. I am terrified I have MS not fibro and that my life is over and I'm going to die of a terrible illness (my biggest phobia). These are my symptoms with a timeline of when:

7 years old – knees would lock and seize up a few times for a couple years

11 years old – sharp chest pain all of a sudden for a few minutes. Occassionaly. Can’t move or breath in deep.

13 yrs old – sharp chest pains and sharp vaginal/uterine pain every once in a while off and on to present day

14 yrs old – frequent urination till present

Early 20’s – joint pain in every joint especially knees and when I worked out only. Sharp pain in my left shoulder after thinking I injured it with weight training. Sharp pain now there when I tense my body, or run. Frequent upper back and neck pain when I stretch (feels tight), hamstrings tight till present. Chronically tired and depressed.

Mid 20’s – diagnosed with loose ligaments.

25 – Knee pain so bad I can’t walk and knees will lock or hurt bad when I bend a certain way. Told about loose ligaments. Weight trained, switched from vegan to omnivore, bulked up, minimal knee pain. Pain in my hips with a burning sensation one night

25- spent 2 terrifying nights in immense pain (sharp and burning pains in chest, back, throat, lower abdomen, one side of my body and spine. 2 separate occasions a couple months apart

25 – Went to hospital for peeing every 10 min. Dehydrated and tremoring (could have been from anxiety)

26 – one week of itching all over my body. No apparent cause. Nausea and loss of appetite, sore stomach the whole time. After a year went off and on.

25-28 (present) – sharp pains have come and gone. Intensified over the last few months and are now everyday were they used to be occasional. Couldn’t move or breath in deep.

27 – Burning lower back pain with vomiting one night. Both sides.

28 – Damaged my right thumb/wrist/forearm – feels like carpal tunnel. Re-occurring after periods of weeks of rest.

28 – Left eye is blurry. Got glasses. Right eye blurry one night then went away. I think my left eye was blurry since 18 just never got checked.

28 – Major lower back pain day and night for 1 month spreading into thighs, and lower abdomen like when on my period. Burning/achy. Numbness/tingling in feet and legs.

28 – Diagnosed with calcific tendonitis in the right hip. Feel that I have the same pain in both. Now new pain sensations since (also just had sinusitis).

28 – Feet felt swollen then became swollen off and on throughout the day. Swelling went away after a week or so but the feeling comes and goes and it my feet hurt every day for a month now.

Newest pain: Burning, mosquito bite sensation, bruised sensation, tenderness allover (especially in fibro points), stabbing/sharp/electric (most often and constant), throbbing, dull/achy, feel like I’ve been stabbed inside my muscles or deeper, cramps/spasms, “cut” sensation, slight numbness/tingling. Worse with exercise or cold packs. Sometimes hot bath with salt helps.
*Frequent heachaches or stabbing in one part of my head and throbbing my whole life.
*Constipation since 8 years old and diarrhea if I take laxatives, too much fruit, too many nuts or magnesium supps
*Clenched jaw all the time. Snap jaw together throughout night
*cold hands and feet
*Dizzy spells and room spins
* Severe tremoring to the point of teeth chattering sometimes but could be from anxiety but not sure since sometimes my heart is not racing when I do.

My famly doesnt think I should overreact and doesnt understand whats going on. I try to talk to them and they just talk over me or shrug and say they dont know what to say or do.

I'm so scared. I never slept well and now I really can't. :cry: so scared...
 

LeighLo13

New member
Joined
May 13, 2014
Messages
2
Reason
Undiagnosed
Diagnosis
05/2014
Country
US
State
Tennessee
I've had several of your symptoms.. My neurologist is getting an MRI ordered for me now to check for lesions and to help rule out specific autoimmune diseases including MS.. I had been seeing rheumatologist who thinks I have fibro. I am now going back to neurologist and he is ordering MRI. You may want to find a good neurologist who can help rule out MS and help ease your mind. Some other things I do to keeps from worrying so much is practice breathing techniques, meditation and yoga.. it helps keep me sane and keeps me from obsessing over my symptoms so much. Hope this helps! :)
 

kmpisces

Distinguished member
Joined
Jun 20, 2013
Messages
151
Diagnosis
00/0000
Country
US
State
PA
Many of your symptoms sound like they could be from an auto immune disorder. This is especially so since you have had symptoms throughout your life. Have you been tested for things like Lupus? I am just curious. Hope to hear your response.
 

dorann

Active member
Joined
Jan 4, 2014
Messages
75
Diagnosis
00/0000
Country
US
State
Kentucky
I don't know that your could just assume MS because of the symptoms that you've been experiencing throughout your life. There are a number of autoimmune disorders that can cause those kinds of symptoms. I would think that the best thing that you can do is to find a doctor that will listen to your concerns and help you to find the complete and proper diagnosis.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Charmed one, so sorry to hear your family thinks you are overreacting. I get the exact same reaction, the only one who seems to understand it's my mom.

Back to the topic: Have you seen a neurologist? He should be able to tell whether you could have MS or something else. I actually suffered from similar symptoms from very early on. I hope you can really get some answers! There is nothing worse than not knowing what is going on with your body, specially for people like us who have this kind of phobias (I'm also afraid of dying from a really nasty disease, ie: cancer).
 

Jenny Heart

Active member
Joined
Feb 25, 2014
Messages
66
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
IL
I've went through some of the things you've went through when you were younger during the course of my life. it's hard to believe that some of those symptoms would have any relation to having Fibromyalgial; however, things that have happened to you are likely to be the same condition when someone else has symptoms like yours. It may not always be Fibromyalgia; however, it maybe because of the same condition, and needs to be evaluated by a trained doctor in this field.
 

Charmed_one

Member
Joined
May 12, 2014
Messages
16
Reason
DX FIBRO
Diagnosis
11/2013
Country
CA
State
ON
Hi everyone,

I really appreciate all your responses. It's good to know I'm not alone as that's how I feel (no friends or fam). I feel like I have some support here <3

I havent seen a neurologist. I will definitely mention to my dr about it.

I don't know if I was checked for lupus although the dr mentioned it many years ago. Maybe he did to a test for me but if he did, he never told me just ran some blood work and told me my liver was abnormal but not to worry then never retested me for liver again.

I had an MRI done almost a year ago and it is normal. I also just got ultrasounds on my pelvis and wrists(check for carpel tunnel or tendinitis) and awaiting results but I had the pelvis one done a year ago as well and it was normal. I'm also getting a hip ultrasound requested by my physio whose trying to help me with the hip tendinitis.

I have meditated infrequently since I was 12 years old but agree it is good to get back into it as a daily practise to help ease anxiety. I also went online and looked up videos on people who live well without limbs or with MS or with Fibro or beat cancer which has inspired me to relax about whatever is going on inside this body of mine.

Would a neurologist test for auto-immune disorders besides MS?

Trellum: I have a great phobia of nasty diseases too so it's extra hard to really accept what's happening right now. I am trying to relax as much as possible by distracting my thoughts and focusing on fun activities I'm still capable of doing. Thank you for the support. <3
 

AnnaOhio

New member
Joined
May 21, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
07/2007
Country
US
State
OH
Hello, I have been in your boat!... I found that my eye Dr. had the answer . Some Dr.'s will send you for a battery of test . You just need a retania scan... if you have MS your eye retania could have spots on them. this is an easy way to elemanate MS .Good Luck!
 

mehlisue

New member
Joined
May 25, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
10/2010
Country
US
State
mo
I sure can relate to your story. Sounds like mine. I had a MRI and there are no brain leisions, but that does not rule out the leisions could be in the spine and not the brain. the only real way to know if it is MS is a spinal tap and testing of the spine fluid. There are several others symptoms that you did not mention and that is a good sign. MS is often misdiagnosed as Fibro as I have read. It will progress if it is MS and become obvious. MS is hard to identify because there is no major event like Fibro but it is a slow developing disorder that takes a lot of time to find.
Meanwhile, there are huge leaps and bounds in the study and treatment of MS. At least there are drugs and treatments that will help you and not like Fibro which is a hit and miss throw it at the wall and see if it works.
God Bless, I know your fear.
 

Charmed_one

Member
Joined
May 12, 2014
Messages
16
Reason
DX FIBRO
Diagnosis
11/2013
Country
CA
State
ON
Hi Anna ohio: Did the eye dr find ms for you? Or was it fibro? I had no idea about the retina scan! I am going for an eye exam in July so we will have to wait and see. Thank you.

Mehlisue: Did it end up still being fibro? I feel a little relieved when you said I didnt mention certain symptoms. I researched diagnosis and found the spinal mri and spinal tap thing too but if it is fibro or not I feel like I am hyper sensitive to pain and am terrified of the after effects of a spinal tap yet I want to rule it out. Did you ever have one done?
 

mehlisue

New member
Joined
May 25, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
10/2010
Country
US
State
mo
I have not had the spinal tap yet. two reasons why. I lost my health insurance and am pretty much on a stand still until I can get it again. I also am having a difficult time in finding a doctor that will listen to me and act on what I say instead of the eye rolling and being ignored like I am just there to get attention. If they only knew how much I hated doctors and mistrust the medical field to begin with. This year I did suffer a Vitreous detachment that no one seems to be able to identify why it happened. I have had several retina scans and there is no sign there as well as the MRI scan of the brain. I know the fear. I would think that after so many neg results, that someone some where would be able to say it was not a issue. What I have been told by a pain clinic after x rays of the cervical neck and spine that I have bone spurs coming out of the cervical neck and as well two herniated disk at level T7 and T11. At the same time I went threw a battery of test that discovered that I do have spinal osteoarthritis and most of it is in the hip and lower spine. It is also found I have a sliding hernia of the stomach and some sort of issue with the muscles in the throat and upper stomach that will not allow the muscles to move in rhythm and so swallowing is a choking issue even on my own spit. Oh for sure over sensitive to any pain now and I was one who birthed a 10 and 1/2 pound baby at home with no drugs. LOL I spent the majority of my life braking horses as well, so for me to not get better is a shock to me and a fear point. I still do not know what is wrong, but know that some of the fibro symptoms do not totally match up with what is going on in my body. that is one of the major problems I am told by my doctor because he has to be super vigilant that there is not a under condition that is going on. Have you noticed that your symptoms have flare points in a month? or maybe weeks that go by? Do you ever have days that you just feel really well and hold your breath wondering if the what ever it is will return? That seems to be my major battle. To be honest, I wish someone could tell me, you just have a couple of over lapping disorders and here is how we treat them instead of wanting to give more depression medications. I still can not get threw to them that I am not depressed. I AM DISTRESSED! Big difference. Keep looking, I have a sneaking feeling that this Fibro thing is changing in it's symptoms and to be honest, I do not think they have a hand on the real reasons. Just my thoughts on it. Hang in there, you do have time if it is MS. MS is not a death sentence anymore and it most certainly can be treated and you can live a life with full functions. Melisue
 

Charmed_one

Member
Joined
May 12, 2014
Messages
16
Reason
DX FIBRO
Diagnosis
11/2013
Country
CA
State
ON
mehlisue,

Im so sorry to hear all that! I can't imagine living in America with that kind of health care system. I have ohip here in canada although it doesnt cover meds and dental and some other things it covers most tests and dr visits (certain drs).

I hope you can get the benefits soon so you can go and I hope they figure this out! I know exactly what u mean about the eye rolling and telling u its anxiety or depression. I do have both anxiety attacks and a history of depression but right now this is what I am anxious and sad about.

I think MS has a better prognosis than fibro! Your right that they dont know what fibro is yet or where it comes from but I KNOW it has a legit physical cause. I'm not making this S**t up and neither are you guys plus I never had this before and I was the most healthiest person out of anyone I knew. Ate super clean, high organic foods, drank plenty of filtered water and exercised like a mad cat then it just crumbled apart on me.

I do have better days than others but there is pain everyday for me. Somedays though I can jump outta bed, other days I feel like I slept on a bed of nails. Sometimes I have loads of energy and then all of a sudden after making breakfast I just have this wave of exhaustion and have to go lay down. But the pain is the most horrible pain I've ever known and I've had my share of physical and mental pain in my time.

Hopefully there will be more clarity in the future for all of this in terms of what it is and how to treat it. I bet some of it is multiple conditions. For example I have scoliosis I just found out about which explains back issues which is hard to separate from say the pinched nerve pain in my armpits or bad headaches.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi everyone,

I really appreciate all your responses. It's good to know I'm not alone as that's how I feel (no friends or fam). I feel like I have some support here <3

I havent seen a neurologist. I will definitely mention to my dr about it.

I don't know if I was checked for lupus although the dr mentioned it many years ago. Maybe he did to a test for me but if he did, he never told me just ran some blood work and told me my liver was abnormal but not to worry then never retested me for liver again.

I had an MRI done almost a year ago and it is normal. I also just got ultrasounds on my pelvis and wrists(check for carpel tunnel or tendinitis) and awaiting results but I had the pelvis one done a year ago as well and it was normal. I'm also getting a hip ultrasound requested by my physio whose trying to help me with the hip tendinitis.

I have meditated infrequently since I was 12 years old but agree it is good to get back into it as a daily practise to help ease anxiety. I also went online and looked up videos on people who live well without limbs or with MS or with Fibro or beat cancer which has inspired me to relax about whatever is going on inside this body of mine.

Would a neurologist test for auto-immune disorders besides MS?

Trellum: I have a great phobia of nasty diseases too so it's extra hard to really accept what's happening right now. I am trying to relax as much as possible by distracting my thoughts and focusing on fun activities I'm still capable of doing. Thank you for the support. <3

No problem :) I'm glad you found my reply helpful and reassuring :) As for your question regarding to the neurologist... well, if he is a good doctor he will :p I just hate how some doctors can be such a pricks when you ask them about things that aren't exactly treated by them and tell you to go see something else, instead of ordering the tests they already know you need!

By the way, was the MRI of your head?
 

mehlisue

New member
Joined
May 25, 2014
Messages
6
Reason
Undiagnosed
Diagnosis
10/2010
Country
US
State
mo
We are both going to find our answers I am sure. This is a tough one and I suspect there is a cause not yet found. for instance, I look at what has changed in our environment in the last ten years. There is a lot of change in what we are exposed to and in the research I have looked into, the two major ones is in the new chemicals that are placed in cigarettes that cause it to be fire retardant, and the over exposure to electronic equipment that we use daily. Both are a major problem that we today are the lab rats who are showing sings of physical stress. Meanwhile, I keep looking because I have a lot more free time than the doctors to look at all the new information and treatments. I think they should pay me when I visit them for the education I give them. LOL
 

AnnaOhio

New member
Joined
May 21, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
07/2007
Country
US
State
OH
Hello,
My test proved to not be MS.
 
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