posted 05-29-2003 09:32 PM            

I just want to give Jesus praise- the praise he deserves. He has touched my body through many months of prayer from my church and other churches, friends and family. He is strengthing me every day. I was hospitalized 5 days for Fibro, last month. I know longer have the tight band feeling around my head or rib cage. The feeling of parts moving inside is totally gone!! He has healed my mind! What everyone calls brain fog! I had it day and night for 3 months- I was like a zombie- I couldn't eat or sleep and was going down hill fast. He raised me up though! To God be the glory. It was a horrible sickness. I hope if you don't know Jesus, you will ask him to come into your heart and be Lord of your life. He is the only healer. Medicine nor man nor Doctor can help you out of this. The blood Jesus shed at the cross is your healing.

God Bless,

Hi All,

Just thought I would share my story (briefly). About 6-7 years ago I went to my Doctor because I had pain in my feet and fingers. We had been walking around at the Zoo, and my feet were like bones walking on the ground instead of any padding around them. He took blood tests and nothing. Off and on my feet ached. About 4 1/2 years ago I started losing a lot of hair in the shower. Then about 2 years ago I couldn't hold a bleach bottle while trying to clean the shower. The pain in my wrist was so bad. I am a physically fit person- working out at the gym 3-4 times a week, and running at home. 5'8" and 122lbs. Also, over the past 6 years I started burping and then vomiting and had a burning stomach- like on fire!!! I would get headaches in the back of my head that would go to the front forehead. It worried me because I vomited from them. I had change in my vision also. Blurry but still 20/20- strange. I thought I was allergic to something and couldn't find out what. The last time I had Starbucks coffee I vomited all night long. I sometimes would wake up in the middle of the night with stomach cramps and have bowel movements. And after breakfast a lot, I would get pains and have to go! I then got shooting pains down my arms and legs and a burning sensation. The Docotor took blood and said it was okay. At this time I also had severe back pain and got bloated around the waist. And felt bloated like PMS when it wasn't that time. I would feel like ants were crawling on my forearms and nothing was there. A lot of times I would be putting on my make up and feel a spider crawling on my foot and toes, and would look down and nothing was there. The latest, my brain started having what I call brain jolts. I could be on the computer or talking to someone and my brain would have like tremors inside. Very disturbing. It feels like you have something really bad wrong with you. Then I got muscle aches, felt like I had cement blocks on my legs when going up stairs. Pain in the knees, fingers, wrists, elbows, when I would use the mouse on the computer it would hurt. I also started feeling like I was short of breath and would get a lump feeling in my throat. I would have chest pains also. I mean you are never aware of your throat but you can feel this. Then recently, I became sensitive to smell. I could smell laundry soap and it made me sick (it was overpowering) like I was going to throw up. The smell of cooking food also did, like when you are pregnant. I also started getting sore spots on my collar bone in the front and then the back of the neck. So any how after years of going to the doctors. Neuro, Endro, MDs, OBGYNs, etc, I made a trip to the Rheumatologist about 6 weeks ago. He knew on the first trip what it was but took blood also. He tested for EBV, Valley Fever, Bone Cancer, everything- nothing showed up. It was Fibro he said. Now since then, I can't sleep at night. Even with Ambien I sleep 2-5 hours. When I start to fall a sleep I have jerked so hard and have spasams so hard my ribs are sore the next morning. I have had tingling in my chest, feelings of being stuck with pins from my feet to my knees, irregular heart beat- beats really hard once or beats really fast or flutters. My shoulders have been really tight- like they won't realx. The worst part is the brain fog. I felt like a "ZOMBIE" for weeks. Your head doesn't feel like it is attached to the rest of your body, and you know you don't have your normal personality. Your symptoms keep getting more and more over time. Oh yeah, I started loosing my eyebrows. I thought I had a thyroid problem. Anyone feeling these feelings should go to a Rheum. Doctor. I went for years to the Doctor, some thought I should try counseling and one told me I was tightly wound and to stay off caffeine! A big help, huh? I have had an upper GI, colonoscopy, CAt scan and an MRI all to find out it was Fibro. I keep editing this thing because I want to tell everyone, every last symptom! Oh, also I am always cold. My hands can be freezing cold like ice but sweaty, burning feelings in my thighs, sweating under the arms and a lump in my throat. It is crazy how you can be hot and cold at the same time.

Okay, here I am adding more symptoms today! Pain behind the ears, mostly the left one. My eye use to twitch a lot, like pulsate. Ringing in the ears. And this may sound crazy but I want to share this too! My favorite store is ROSS. For you ROSS shoppers that look at their housewares--- When I would look at little trunks, or decorative boxes that were from China or other place- when I would open the lid- the odor was so powerful. You know the smell those things have- it was overwhelming! Also, I have had my nails done at the salon for 16 years. The last 2 trips I almost passed out at the smell of the nail stuff. This may help the gals out there. Sensitivity to smell, and getting sick like pregnancy sick were big tip offs to me. As I think of more symptoms I will add them!Thought of more! Sore under the armpits and I have developed bad allgeries. I sneeze a lot and my eyes itch and are always red. Here I am again, with a new symptom. I have had a feeling of a belt around my ribcage and breathing difficulty. Back with another symptom! About a year and a 1/2 ago before this all turned really bad- I would get itchy skin. It was always at night when I would go to bed. My legs would itch so much I couldn't stop scratching also my shoulders and upper arms would itch. I thought maybe it was from shaving my legs or an allergic reaction.

***more new symptoms! I got a tight band around my head when I got really sick. It was above my ears and went around my head. It was a tight band that lasted about 3 weeks. Doctors think you are crazy when you tell them this. Then over the last few days a feeling of a belt around my ribcage. Like wearing a high pair of pants- or panty hose! And breathing trouble. Sometimes I wake up at night and have to sit up in bed. Oh, and how I could forget. I started having night sweats. Every few months I would sweat at night. I would think I just had to heavy of sleeping clothes on. Then I began sweating once a week, and then several times a week. I would wake up with sweat in the middle of my chest only- and sometimes underneath my hair in the back.

It is funny with this FM. Every thing I got- like headaches- I would think it was from working on the computer or doing a certain exercise at the gym. With burping and vomiting- I thought I had eaten something that didn't agree- with stomach cramps- thought I was lacto intol. Itching-thought I was allergic to the fancy lotion I put on- a Ginger smell or shaving foam. When I was going to bed at 5 and 6 at night- thoght it was because of working and just being tired.

Finally, all these symptoms come down to a very bad flu like symptoms. I have been sick mostly in bed for almost 7 weeks now.

If these symptoms have helped you, or you can relate to them- it would be great if you would send me an email. I wanted to let others know every last symptom so they knew they weren't going crazy.

There is no medical cure but let me to tell you that the blood of Jesus is the only cure! The book of Isaiah tells us that He was wounded for our transgressions, He was bruised for iniquities, The chastisement for our peace was upon him, And by his stripes we are healed! The Bible tells us that Jesus took 40 minus one stripes on his back. I have heard the Medical people say there are 39 major groups that diseases fall into. If you don't know Jesus, I would encourage you to ask him to come into your heart. Because there is a real Heaven and a Lake of Fire. You will spend eternity somewhere. If you think this suffering is horrible, how about forever? I am praying for my healing, along with many others. This will be taken from me. If I can help you in any way, let me know.

Love in Jesus,

------------------

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posted 05-30-2003 12:02 AM            

I just had a T3 T4 and TSH? I think. Just had it done 3 weeks ago. I have had it tested 5 or 6 times actually. I really thought it was my thyroid because even nose hairs were coming out!!! I thank you for your concern.

Sherri

quote:

---

Originally posted by lovemythreeguys2002:
HI....muscle aches, losing your eyebrows and brain fog are major thyroid symptoms....I would get tested again..many times the symptoms come before it shows up in blood. Also, the criteria has just been changed, so people who were told were normal are very likely not.

Just wanted to let you know...I also thought I had fibro and found out it was my thyroid.

---

posted 05-30-2003 12:13 AM            

quote:

---

Originally posted by lovemythreeguys2002:
Hi again...I would call them and ask what the numbers were, you have the right to know, by law....then maybe you could post them here. Even many dr's don't know of the new criteria....it just came out in the last few months.

I have read many stories where people have suffered for years being told their thyroid was normal and they were Dxed with fibro....they finally found out it was the thyroid, they treated it and are much much better. I just want to help

---

posted 05-30-2003 11:59 AM            

quote:

---

Originally posted by girlygirly:
I agree look at your thyroid numbers. My bloodwork came up normal and I had many of the symptoms. My antibodies also came up normal. I had an ultrsound done, that was when it was noticed that I have a goiter and a nodule. My Tsh was 2.2 in Oct and 1.61 in April. The whole panel was within the normal ranges. So dispite my "normal" findings I did have a thyroid problem. It might be a good idea to go onto the thyroid board here to read other stories, (very similar to yours).

---

posted 05-30-2003 12:25 PM            

Did you ever have trouble breathing? My TSH fluctuated like yours within 2 months from a 2.66 to a 1 something?

quote:

---

Originally posted by girlygirly:
I agree look at your thyroid numbers. My bloodwork came up normal and I had many of the symptoms. My antibodies also came up normal. I had an ultrsound done, that was when it was noticed that I have a goiter and a nodule. My Tsh was 2.2 in Oct and 1.61 in April. The whole panel was within the normal ranges. So dispite my "normal" findings I did have a thyroid problem. It might be a good idea to go onto the thyroid board here to read other stories, (very similar to yours).

---

posted 06-01-2003 05:08 PM            

quote:

---

Originally posted by girlygirly:
The only trouble breathing was after walking up a flight of stairs I would be out of breath, also unloading groceries from my car I found myself to be out of breath. I also found myself yawning alot, either it was a symptom or I coincidentially hung around alot of boring people (ha,ha). Remember that I may have symptoms that you may not have, I know 6 people that have thyroid problems (all friends, isn't that weird?) none of us had all of the same symptoms.

Also, FYI if you eat alot of soy or take soy supplements I have read that it decreases thyroid function. For more info on it do a search on "is soy bad for you". You will be amazed on what it does and you will be amazed on how much is hidden in processed foods. I will NEVER ever buy a product that contains soy again. It is not a "health" food as claimed.

---

posted 06-02-2003 11:09 AM            

I responded to your out of breath post, but figured I'd post again here in response to a few more symptoms you are having..

Some of your problems might have to do with sleep deprivation.. I've been thinking about the out of breath thing & the spontaneously blurred vision and I think both of those symptoms stopped around the time that I started getting an adequate amount of sleep.. I was only sleeping about 2 hours a night (if that) around the time of my diagnosis and some retarded doctor put me on 40mg of prednisone a day which made the quality of what little sleep I got even worse.. I didn't take sleeping pills (although they were offered), but found that 2 Benadryls a night were enough to help me sleep.. I take one around 7pm, another about 9pm and am usually ready to sleep by 10pm or so.. It's obviously good for the allergy problems too (which FMS has apparently made me oversensitive to also)..

As for the stuffy head, fibrofog feeling, I saw your post about dietary changes and assume that you cut out MSG and Nutrasweet.. If not, I highly recommend it.. Also, since you obviously don't have anything against exercise, you might try yoga or something with an eastern flair.. It's unbelievably good for mind and body.. Between dietary changes and yoga, I managed to clear up my fibrofog almost completely..

I have major sensory overstimulation too.. Oddly enough, when my rheumatologist prescribed Xanax for me, most of it got better.. I know its use is controversial because it is addictive (but so are sleeping pills, codeine based pain pills and a lot of other things we FMSers are prescribed), but it quiets my nervous system and therefore cuts down on my oversensory perception.. It probably helps me sleep too because it quiets my body down (although I'm on such a small dose that I don't even feel like I've taken anything, it just seems to help)..

I still have to try to avoid places that smell, people who wear too much perfume, places that are lit with fluorescent lighting, places that are too loud, clothes that are too tight or are made out of scratchy material - it's no picnic to deal with fibromyalgia..

Anyway, I'm not sure if any of that helped, but just thought I'd share.. If you're tightly wound (as I am), you might make sure that you've had a full thyroid panel as the others on this board suggested to rule out Graves' disease, but I've got or had quite a few of your symptoms and have normal thyroid function (so far).. My mom has Graves' and my grandmother is hypothyroid, so it wouldn't surprise me if I don't have some sort of thyroid malfunction sooner or later..

Hope that sort of helped..

Take Care,
Melanie

posted 06-02-2003 11:58 AM            

You helped a lot! Speaking of clothes. I can't stand to wear turtlenecks and not anything that comes up high on my neck. Necklaces feel weird when I wear them, I am constantly pulling out them. If I wear a t shirt with a little patch sewn on the chest- the back of it rubbing against me drives me crazy! Sometimes when I get into a store, I get crazy and feel like I am going to pass out, and have to leave. I don't do nutra sweet and MSG period. What things should would be eating? There is a Windsor pilates tape I am going to order. I also have Billy Blanks tapes. Thanks for sharing.

God Bless,

quote:

---

Originally posted by Creeping Crud:
Hey MISKC91,

I responded to your out of breath post, but figured I'd post again here in response to a few more symptoms you are having..

Some of your problems might have to do with sleep deprivation.. I've been thinking about the out of breath thing & the spontaneously blurred vision and I think both of those symptoms stopped around the time that I started getting an adequate amount of sleep.. I was only sleeping about 2 hours a night (if that) around the time of my diagnosis and some retarded doctor put me on 40mg of prednisone a day which made the quality of what little sleep I got even worse.. I didn't take sleeping pills (although they were offered), but found that 2 Benadryls a night were enough to help me sleep.. I take one around 7pm, another about 9pm and am usually ready to sleep by 10pm or so.. It's obviously good for the allergy problems too (which FMS has apparently made me oversensitive to also)..

As for the stuffy head, fibrofog feeling, I saw your post about dietary changes and assume that you cut out MSG and Nutrasweet.. If not, I highly recommend it.. Also, since you obviously don't have anything against exercise, you might try yoga or something with an eastern flair.. It's unbelievably good for mind and body.. Between dietary changes and yoga, I managed to clear up my fibrofog almost completely..

I have major sensory overstimulation too.. Oddly enough, when my rheumatologist prescribed Xanax for me, most of it got better.. I know its use is controversial because it is addictive (but so are sleeping pills, codeine based pain pills and a lot of other things we FMSers are prescribed), but it quiets my nervous system and therefore cuts down on my oversensory perception.. It probably helps me sleep too because it quiets my body down (although I'm on such a small dose that I don't even feel like I've taken anything, it just seems to help)..

I still have to try to avoid places that smell, people who wear too much perfume, places that are lit with fluorescent lighting, places that are too loud, clothes that are too tight or are made out of scratchy material - it's no picnic to deal with fibromyalgia..

Anyway, I'm not sure if any of that helped, but just thought I'd share.. If you're tightly wound (as I am), you might make sure that you've had a full thyroid panel as the others on this board suggested to rule out Graves' disease, but I've got or had quite a few of your symptoms and have normal thyroid function (so far).. My mom has Graves' and my grandmother is hypothyroid, so it wouldn't surprise me if I don't have some sort of thyroid malfunction sooner or later..

Hope that sort of helped..

Take Care,
Melanie

[This message has been edited by Creeping Crud (edited 06-02-2003).]

---

posted 06-02-2003 12:23 PM            

Thanks. I read on one post about someone taking pink?Benadryls. Was that you? I'll try it. I have been taking Alluna.

quote:

---

Originally posted by Creeping Crud:
Hey MISKC91,

I responded to your out of breath post, but figured I'd post again here in response to a few more symptoms you are having..

Some of your problems might have to do with sleep deprivation.. I've been thinking about the out of breath thing & the spontaneously blurred vision and I think both of those symptoms stopped around the time that I started getting an adequate amount of sleep.. I was only sleeping about 2 hours a night (if that) around the time of my diagnosis and some retarded doctor put me on 40mg of prednisone a day which made the quality of what little sleep I got even worse.. I didn't take sleeping pills (although they were offered), but found that 2 Benadryls a night were enough to help me sleep.. I take one around 7pm, another about 9pm and am usually ready to sleep by 10pm or so.. It's obviously good for the allergy problems too (which FMS has apparently made me oversensitive to also)..

As for the stuffy head, fibrofog feeling, I saw your post about dietary changes and assume that you cut out MSG and Nutrasweet.. If not, I highly recommend it.. Also, since you obviously don't have anything against exercise, you might try yoga or something with an eastern flair.. It's unbelievably good for mind and body.. Between dietary changes and yoga, I managed to clear up my fibrofog almost completely..

I have major sensory overstimulation too.. Oddly enough, when my rheumatologist prescribed Xanax for me, most of it got better.. I know its use is controversial because it is addictive (but so are sleeping pills, codeine based pain pills and a lot of other things we FMSers are prescribed), but it quiets my nervous system and therefore cuts down on my oversensory perception.. It probably helps me sleep too because it quiets my body down (although I'm on such a small dose that I don't even feel like I've taken anything, it just seems to help)..

I still have to try to avoid places that smell, people who wear too much perfume, places that are lit with fluorescent lighting, places that are too loud, clothes that are too tight or are made out of scratchy material - it's no picnic to deal with fibromyalgia..

Anyway, I'm not sure if any of that helped, but just thought I'd share.. If you're tightly wound (as I am), you might make sure that you've had a full thyroid panel as the others on this board suggested to rule out Graves' disease, but I've got or had quite a few of your symptoms and have normal thyroid function (so far).. My mom has Graves' and my grandmother is hypothyroid, so it wouldn't surprise me if I don't have some sort of thyroid malfunction sooner or later..

Hope that sort of helped..

Take Care,
Melanie

[This message has been edited by Creeping Crud (edited 06-02-2003).]

---

posted 06-02-2003 12:28 PM            

Tell me about your dietary changes? What you changed? What you eat now? I started juicing a lot of carrots and apples. I don't know if that was good or bad for me?

Please let me know,

Thanks

quote:

---

Originally posted by Creeping Crud:
Hey MISKC91,

I responded to your out of breath post, but figured I'd post again here in response to a few more symptoms you are having..

Some of your problems might have to do with sleep deprivation.. I've been thinking about the out of breath thing & the spontaneously blurred vision and I think both of those symptoms stopped around the time that I started getting an adequate amount of sleep.. I was only sleeping about 2 hours a night (if that) around the time of my diagnosis and some retarded doctor put me on 40mg of prednisone a day which made the quality of what little sleep I got even worse.. I didn't take sleeping pills (although they were offered), but found that 2 Benadryls a night were enough to help me sleep.. I take one around 7pm, another about 9pm and am usually ready to sleep by 10pm or so.. It's obviously good for the allergy problems too (which FMS has apparently made me oversensitive to also)..

As for the stuffy head, fibrofog feeling, I saw your post about dietary changes and assume that you cut out MSG and Nutrasweet.. If not, I highly recommend it.. Also, since you obviously don't have anything against exercise, you might try yoga or something with an eastern flair.. It's unbelievably good for mind and body.. Between dietary changes and yoga, I managed to clear up my fibrofog almost completely..

I have major sensory overstimulation too.. Oddly enough, when my rheumatologist prescribed Xanax for me, most of it got better.. I know its use is controversial because it is addictive (but so are sleeping pills, codeine based pain pills and a lot of other things we FMSers are prescribed), but it quiets my nervous system and therefore cuts down on my oversensory perception.. It probably helps me sleep too because it quiets my body down (although I'm on such a small dose that I don't even feel like I've taken anything, it just seems to help)..

I still have to try to avoid places that smell, people who wear too much perfume, places that are lit with fluorescent lighting, places that are too loud, clothes that are too tight or are made out of scratchy material - it's no picnic to deal with fibromyalgia..

Anyway, I'm not sure if any of that helped, but just thought I'd share.. If you're tightly wound (as I am), you might make sure that you've had a full thyroid panel as the others on this board suggested to rule out Graves' disease, but I've got or had quite a few of your symptoms and have normal thyroid function (so far).. My mom has Graves' and my grandmother is hypothyroid, so it wouldn't surprise me if I don't have some sort of thyroid malfunction sooner or later..

Hope that sort of helped..

Take Care,
Melanie

[This message has been edited by Creeping Crud (edited 06-02-2003).]

---

posted 06-02-2003 02:21 PM            

Yes, it was probably me who posted about taking pink benadryls.. I've found that the "kapseals" work better than the tablets - probably because they're time released.. Granted, they haven't cured me of all my sleep issues, but they have helped considerably (especially since it's given me some sort of pre-sleep ritual - I just relax in front of the TV after 7pm with my decaf green tea & usually watch something soothing like the History or Discovery Channel)..

Sleep deprivation is rotten and I can totally empathize what you're going through.. I was literally so sleep deprived during my diagnosis process that I thought I was going crazy (the prednisone didn't help matters either - bad steroids!).. You really just have to experiment with things and see what works for you (and try not to stress out about not getting enough sleep - which is perhaps the hardest thing to do).. And if all else fails, try to take naps if you can whenever you can (until you start sleeping regularly at night)..

I tried melatonin, but found that it didn't help me fall asleep, it just made me feel groggy the next day.. Tylenol PM makes me feel hideous & I don't need the extra pain relief drugs in my system since I'm already taking ketoprofen.. I tried relaxation CD's that are supposed to help you fall asleep, but they were little more than a waste of money.. Some people take anti-depressants to help improve the quality of their sleep too - I was on them for about a month and got this horrid rash all over my face, so I decided that wasn't the route for me.. Needless to say, it was a long process..

I have more clothes issues than I can probably fit into one post.. I can't stand anything around my neck either - it makes me feel like I'm being suffocated.. I practically live in my sweatpants and some really super soft t-shirts that I got from Eddie Bauer.. And don't even get me started about bras.. I would burn mine if I could..

I get the same feelings when I go to large stores - especially warehouse stores and home improvement chains.. I start feeling sick and weird & just know that if I don't get out of there as soon as possible, they're going to have to scrape me off the floor.. I used to call it dizziness or lightheadedness (and used to pinch myself to keep myself from passing out), but neither of those words accurately describe the way I feel.. Weird is really the best word I can come up with and I think it's partially due to high ceilings and fluorescent lights (combined with all the hustle, bustle and smells around me)..

Diet is a tough one.. I've played around with mine a lot, but only found a few things that helped.. One was cutting out the "evil four" that I posted about earlier.. Another was reducing my complex carbohydrate consumption (like sugars and bread products) in the evening and late afternoon hours.. I'm also a huge fan of decaf green tea (I'm not sure if it's done any good, but I find that drinking hot tea is relaxing).. I also don't eat food that I don't personally prepare (so I know exactly what's in it).. As for vitamin and mineral supplements, I've experienced absolutely no results from taking them & I've tried more than my fair share..

I spent about 6 months almost completely bedridden before I finally got a diagnosis.. I was so sick that I honestly thought I was going to die before I got any help.. The fact that my ANA count was high at the time made things a lot harder.. It took about another 6-8 months to get my symptoms under some sort of control.. My first 2 rheumatologists were worthless individuals, so that's why I've made so many non-medical changes in my lifestyle.. And I know what you mean about the making excuses factor.. I made excuses about my health for several years (after a case of viral labyrinthitis that pushed me over the FMS edge) until I was so sick that I couldn't make excuses anymore and had to seek help..

In any event, I only have one more suggestion that might sound a little strange.. I don't know how much research you've done about FMS "cures", but there's a doctor (Dr. St. Amand) that swears by guaifenesin.. Although I had absolutely no desire to follow his protocol, I bought some cough syrup that has guaifenesin in it (an expectorant) and take it when I'm feeling especially bad.. Believe it or not, sometimes it helps.. And as for the other times, I just have to wait things out.. I imagine that it probably just helps loosen up and dispose of whatever garbage my body seems to accumulate..

Anyway, it'll probably take a while to find out what works for you, but if your case is anything like mine was, things will get a little better.. It's all just trial and error.. Finding a good rheumatologist is obviously a huge bonus too.. But most of all, just keep the faith and try not to stress yourself out too much..

posted 06-02-2003 03:29 PM            

You are so helpful! The thing in the store- I imagine it would be like the feeling that someone having a panic attack would have. It is like the minute I go through the door I start losing it. My heart beats fast when I am trying to browse, and I try to breathe deep, I can't focus and feel like I need to crawl back into my shell. You are right, it really isn't a dizzy feeling or lighthead feeling but you think you are going to pass out. My hands get really cold when this happens too. It is just a very scary feeling. I've been bedridden for about 7 weeks now. One day when my mind feels okay my legs ache, and when my legs don't ache my mind feels spaced out. I'm going to have my mom go get me some kapseals. I started having jolts in my head and then I would feel strange after- I thought I was having strokes. Before this completly manifested into a bedridden state, I would worry when I went places with people, especially out to eat- if I was going to feel crazy or have something weird happen. I get the fulness in my throat a lot. I really felt like I was dying. I had so many symptoms and the Doctor kept saying I was fine. I told him I feel like I need to be in the hospital. I can no longer work at my job. Thanks, I've got the faith. My faith is the only thing I can count on.

Write back!

quote:

---

Originally posted by Creeping Crud:
Hey MISKC91,

Yes, it was probably me who posted about taking pink benadryls.. I've found that the "kapseals" work better than the tablets - probably because they're time released.. Granted, they haven't cured me of all my sleep issues, but they have helped considerably (especially since it's given me some sort of pre-sleep ritual - I just relax in front of the TV after 7pm with my decaf green tea & usually watch something soothing like the History or Discovery Channel)..

Sleep deprivation is rotten and I can totally empathize what you're going through.. I was literally so sleep deprived during my diagnosis process that I thought I was going crazy (the prednisone didn't help matters either - bad steroids!).. You really just have to experiment with things and see what works for you (and try not to stress out about not getting enough sleep - which is perhaps the hardest thing to do).. And if all else fails, try to take naps if you can whenever you can (until you start sleeping regularly at night)..

I tried melatonin, but found that it didn't help me fall asleep, it just made me feel groggy the next day.. Tylenol PM makes me feel hideous & I don't need the extra pain relief drugs in my system since I'm already taking ketoprofen.. I tried relaxation CD's that are supposed to help you fall asleep, but they were little more than a waste of money.. Some people take anti-depressants to help improve the quality of their sleep too - I was on them for about a month and got this horrid rash all over my face, so I decided that wasn't the route for me.. Needless to say, it was a long process..

I have more clothes issues than I can probably fit into one post.. I can't stand anything around my neck either - it makes me feel like I'm being suffocated.. I practically live in my sweatpants and some really super soft t-shirts that I got from Eddie Bauer.. And don't even get me started about bras.. I would burn mine if I could..

I get the same feelings when I go to large stores - especially warehouse stores and home improvement chains.. I start feeling sick and weird & just know that if I don't get out of there as soon as possible, they're going to have to scrape me off the floor.. I used to call it dizziness or lightheadedness (and used to pinch myself to keep myself from passing out), but neither of those words accurately describe the way I feel.. Weird is really the best word I can come up with and I think it's partially due to high ceilings and fluorescent lights (combined with all the hustle, bustle and smells around me)..

Diet is a tough one.. I've played around with mine a lot, but only found a few things that helped.. One was cutting out the "evil four" that I posted about earlier.. Another was reducing my complex carbohydrate consumption (like sugars and bread products) in the evening and late afternoon hours.. I'm also a huge fan of decaf green tea (I'm not sure if it's done any good, but I find that drinking hot tea is relaxing).. I also don't eat food that I don't personally prepare (so I know exactly what's in it).. As for vitamin and mineral supplements, I've experienced absolutely no results from taking them & I've tried more than my fair share..

I spent about 6 months almost completely bedridden before I finally got a diagnosis.. I was so sick that I honestly thought I was going to die before I got any help.. The fact that my ANA count was high at the time made things a lot harder.. It took about another 6-8 months to get my symptoms under some sort of control.. My first 2 rheumatologists were worthless individuals, so that's why I've made so many non-medical changes in my lifestyle.. And I know what you mean about the making excuses factor.. I made excuses about my health for several years (after a case of viral labyrinthitis that pushed me over the FMS edge) until I was so sick that I couldn't make excuses anymore and had to seek help..

In any event, I only have one more suggestion that might sound a little strange.. I don't know how much research you've done about FMS "cures", but there's a doctor (Dr. St. Amand) that swears by guaifenesin.. Although I had absolutely no desire to follow his protocol, I bought some cough syrup that has guaifenesin in it (an expectorant) and take it when I'm feeling especially bad.. Believe it or not, sometimes it helps.. And as for the other times, I just have to wait things out.. I imagine that it probably just helps loosen up and dispose of whatever garbage my body seems to accumulate..

Anyway, it'll probably take a while to find out what works for you, but if your case is anything like mine was, things will get a little better.. It's all just trial and error.. Finding a good rheumatologist is obviously a huge bonus too.. But most of all, just keep the faith and try not to stress yourself out too much..

Take Care,
Melanie

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posted 06-02-2003 03:31 PM            

About the bra- I never could stand them but the week before I got really sick. I couldn't even stand to wear one to work- it felt like it was cutting off my breath!

quote:

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Originally posted by Creeping Crud:
Hey MISKC91,

Yes, it was probably me who posted about taking pink benadryls.. I've found that the "kapseals" work better than the tablets - probably because they're time released.. Granted, they haven't cured me of all my sleep issues, but they have helped considerably (especially since it's given me some sort of pre-sleep ritual - I just relax in front of the TV after 7pm with my decaf green tea & usually watch something soothing like the History or Discovery Channel)..

Sleep deprivation is rotten and I can totally empathize what you're going through.. I was literally so sleep deprived during my diagnosis process that I thought I was going crazy (the prednisone didn't help matters either - bad steroids!).. You really just have to experiment with things and see what works for you (and try not to stress out about not getting enough sleep - which is perhaps the hardest thing to do).. And if all else fails, try to take naps if you can whenever you can (until you start sleeping regularly at night)..

I tried melatonin, but found that it didn't help me fall asleep, it just made me feel groggy the next day.. Tylenol PM makes me feel hideous & I don't need the extra pain relief drugs in my system since I'm already taking ketoprofen.. I tried relaxation CD's that are supposed to help you fall asleep, but they were little more than a waste of money.. Some people take anti-depressants to help improve the quality of their sleep too - I was on them for about a month and got this horrid rash all over my face, so I decided that wasn't the route for me.. Needless to say, it was a long process..

I have more clothes issues than I can probably fit into one post.. I can't stand anything around my neck either - it makes me feel like I'm being suffocated.. I practically live in my sweatpants and some really super soft t-shirts that I got from Eddie Bauer.. And don't even get me started about bras.. I would burn mine if I could..

I get the same feelings when I go to large stores - especially warehouse stores and home improvement chains.. I start feeling sick and weird & just know that if I don't get out of there as soon as possible, they're going to have to scrape me off the floor.. I used to call it dizziness or lightheadedness (and used to pinch myself to keep myself from passing out), but neither of those words accurately describe the way I feel.. Weird is really the best word I can come up with and I think it's partially due to high ceilings and fluorescent lights (combined with all the hustle, bustle and smells around me)..

Diet is a tough one.. I've played around with mine a lot, but only found a few things that helped.. One was cutting out the "evil four" that I posted about earlier.. Another was reducing my complex carbohydrate consumption (like sugars and bread products) in the evening and late afternoon hours.. I'm also a huge fan of decaf green tea (I'm not sure if it's done any good, but I find that drinking hot tea is relaxing).. I also don't eat food that I don't personally prepare (so I know exactly what's in it).. As for vitamin and mineral supplements, I've experienced absolutely no results from taking them & I've tried more than my fair share..

I spent about 6 months almost completely bedridden before I finally got a diagnosis.. I was so sick that I honestly thought I was going to die before I got any help.. The fact that my ANA count was high at the time made things a lot harder.. It took about another 6-8 months to get my symptoms under some sort of control.. My first 2 rheumatologists were worthless individuals, so that's why I've made so many non-medical changes in my lifestyle.. And I know what you mean about the making excuses factor.. I made excuses about my health for several years (after a case of viral labyrinthitis that pushed me over the FMS edge) until I was so sick that I couldn't make excuses anymore and had to seek help..

In any event, I only have one more suggestion that might sound a little strange.. I don't know how much research you've done about FMS "cures", but there's a doctor (Dr. St. Amand) that swears by guaifenesin.. Although I had absolutely no desire to follow his protocol, I bought some cough syrup that has guaifenesin in it (an expectorant) and take it when I'm feeling especially bad.. Believe it or not, sometimes it helps.. And as for the other times, I just have to wait things out.. I imagine that it probably just helps loosen up and dispose of whatever garbage my body seems to accumulate..

Anyway, it'll probably take a while to find out what works for you, but if your case is anything like mine was, things will get a little better.. It's all just trial and error.. Finding a good rheumatologist is obviously a huge bonus too.. But most of all, just keep the faith and try not to stress yourself out too much..

Take Care,
Melanie

---

posted 06-02-2003 10:05 PM            

My symptoms (the ones that I can think of now from memory):

1) Muscle pains near the joints after exercising
2) Urinary problems
3) Chest pains
4) Lower back pains
5) Shoulder, neck, and back pains near the shoulder blades
6) Unexplained skin rashes
7) Gum disease
8) Loose teeth
9) Headaches
10) Tingling of the hands (after the tooth broke)

It's a long story, but I linked these all to my mercury-silver dental amalgams about 10 years ago. After slowly detoxifying my body further of mercury over the years, I've continued to get well. I was told to not run more than a hundred yards by a doctor in 1978, and now I run nearly 20 miles a week. This past week, I ran and hiked for 25 miles. My running speed continues to increase (on a consistent basis) since I've been taking cilantro. Cilantro is a natural chelator of mercury, lead, and aluminum.

I don't know if you have any "silver" fillings, but I had eight of them. I thought I would let you know, in case that this information might help. These amalgam fillings are actually composed of mostly mercury - the dentists often don't inform us, other than a few places. If you have these dental fillings, and you would like more information, please let me know.

Nearly 20 years ago, I experimented with changing my diet. That helped some. Later, years later, I started with herbs as I got so sick that I didn't care to see another day. The herbs helped me survive, but the skin rashes then got worse. Finally I linked all of this to the amalgams when my tooth broke (exposing one amalgam) and my symptoms got worse - much worse. The headaches were intense. I looked at this tooth breaking as a God-send, for it was the key to helping me get better. I had the link and I was on my way to new discoveries. I had these mercury-silver dental amalgams replaced with (I believe) porcelain "white" fillings.

The detoxification period that followed for me was mostly good, but one experiment was very bad. That was the time that I tried anti-mercury components. After that bad experience, I then stayed with my herbs and special diet.

I've seen you describe your chest pains. Maybe I can describe mine and see if you can relate. My chest pains started near the center of the chest - near the heart. It didn't feel like it was the heart but rather near the sternum. The feeling was awful. It's so hard to explain. It was kind of like, you couldn't take another breath, but you could breathe. It was like something squeezing you with pain. I found two solutions. With experimentation, I found that calcium pills helped. This was a great relief for me, one time, when I had this chest pain "attack" at work. I went out to the drug store, at lunch hour, and got these supplements. I was so surprised that they helped a little. Previously, the calcium/magnesium pills helped with the muscle aches, so I thought I would try this. It worked - at least temporarily. But these chest pain "attacks" would continue.... Then I found another way to escape them, if I didn't have these pills. I would take deep deep breaths - and fill the lungs up as much as I could - beyond what I thought my lungs would hold. I would expand the chest cage tremendously. It might take me about 15 or 20 minutes of these deep breaths, and finally the pain would subside. With these chest pains, they would migrate for me towards the chin. It was awful. It's so strange, that I have a hard time of explaining it. I don't know if anyone can really understand....

posted 06-13-2003 12:42 PM            

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