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Old 07-10-2007, 10:32 PM   #1
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BALiera HB User
My Life in Fibro Hell

hi, i've recently been diagnosed with fibro...or so they think. anyway it first was triggered during the sixth month of my pregancy. i simply woke up one day more tired than the previous day and with this feeling of being unbalanced, from there its has never gone away. i've been through all the tests of course nothing abnormal except for continous blood in my urine without an infection, everything else is clear and an HDL count of 25. my weight is within normal, i could loose some fat mass however it is normal. i've been to chiros, acupunturist and massages only make my muscles more sore. stress, exercise and upper arm movements trigger my mind to feel foggy. i can sleep all the hours i want and i will only feel more tired, seems like i don't sleep. i haven't been checked for sleep apnea yet which is the next one on the list. i'd like to know if any one else has trouble exercising? also does eating make anyone feel tired? mostly i'd like to hear your stories to help me cope with mine and feel that i am not crazy or that i am going to die at a young age from something that the docs might not be looking for. any how i will appreciates your responses.

 
Old 07-11-2007, 05:35 PM   #2
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Re: My Life in Fibro Hell

Hi there,
Not to worry you are not crazy.I had my 2nd child at the age of 41.It was very exhausting.I stayed tired all the time.
Now she is 5 and I am still tired.I am curious what type of DR diagnosed you with fibro?
For yrs I was referred to orthopedics,neuros,neurosurgeons and have been
a patient at an M.S. clinic for 2 yrs.
Eventually I was seen by a rheumy.However...many tests and other diseases had been eliminated by that stage.
Mae

 
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Old 07-11-2007, 06:40 PM   #3
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Re: My Life in Fibro Hell

i was dx by a p.a. not a real doc. but he is the best one so far. he is patient with me i am the one that gets dramatic. so where you dx with ms? that is one of my fears but i've had ct scans and doc doesn't believe that I have that, but i also know that it can take years to diagnose it.

 
Old 07-11-2007, 07:16 PM   #4
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Re: My Life in Fibro Hell

maebell, so what are your symptoms? i've heard terrible things about MS... sorry to hear about your illness. lately i've been looking into CFS which is somewhat similar to many things.

 
Old 07-11-2007, 09:09 PM   #5
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ladynight HB User
Smile Re: My Life in Fibro Hell

Mine took years before they finally figured out what it was. I had severe muscle spasms and pain, they kept giving me medicine for it but it just would not help. I had a back problem and the night before I went to the surgeon I marked every where on my body in pen where I had been hurting. When the Doc checked me the next day he laughed at all my markings and then he asked me if my family doc had ever told me about (FM) Fibromyalgia. I said no. He said well I think that you have it besides your back problem so go back to your family doc.- and have him check you over. So I did and sure enough all my trigger points were effected. The doctors have been very good with me since they now know what they are dealing with, but it has not been an easy road way. The fibro fog is hard to deal with at times not to mention the pain our bodies go thru. Washing clothes is one of my hardest jobs I have to do. I pay for it at least for one to two days after I do my wash (the pain I suffer is unreal). If I clean my house to fast I pay for it also. You have to learn to try to find new ways to handle chores. One person told me it was like you have to figure one part of you has died and now you are a new person this new person has to learn how to handle daily life a new way and boy was she so right. Once you find what you can and can no longer do it will help you day to day.Try not to over do it in a days time. Just hang in there and take it one day at a time or if that is to hard take it one minute at a time. Just remember you are not alone, we are here with you.
Lady

 
Old 07-12-2007, 07:50 PM   #6
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Smile Re: My Life in Fibro Hell

It is true that fibromyalgia, especially in a flare-up, makes you tired and sleepy for days.....I can sleep for 14 hours, and turn around and go back to sleep. They say it is due to not being able to go into a deep enough sleep to actually 'rest the body', due to the pain. Whether we can feel it enough to wake up or not, it does not matter. Digestive Enzymes help me, also, because my body was not digesting food in a way that I was getting my nutrients, which made me even more tired. Try them. I like 'Doctors A-Z', a brand my chiropractor sells. That along with a good multi-vitamin (one that will decompose in a glass of water in under 20 minutes) is best. For me, it has been a lot of trial and error to find what works and what doesn't. If I had not found my Doctor though, I don't know where I'd be right now.Good Luck to you.

 
Old 07-12-2007, 09:16 PM   #7
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Re: My Life in Fibro Hell

My sympathies are with you... I was diagnosed seven years ago by an internist after many lab tests and procedures turned up negative. I did some research on my own, and purchased the book: Fibromyalgia and Chronic Myofascial Pain - A Survival Manual by Dr. Devin Starlanyl. I took the book to my doctor and we went over it together, especially the tender points. Looking back, I realize that many doctors would not be open to this kind of research or input from their patients - I guess I was fortunate in that regard. (In the ensuing years, I had the diagnosis confirmed by a rheumatologist.)

I could write volumes about what has ensued over the past seven years. Here's what I can offer re/ treatment that helped me to keep working at a full-time job, and to single parent a teenage boy:

Gentle massage therapy and cranio-sacral release (don't let a massage therapist go hog-wild, as they are sometimes apt to do) Make sure to tell the massage therapist that you have fibro, and especially if you are in a flare

Chiropractor for migraine headache-related symptoms

Acupuncture for sleep and energy level

I would stay off prescription meds to the extent possible - I have been on as many as eight different meds at the same time. After a while, they become less effective, and they all have side-effects that impact how the others work. Right now I'm trying to wean off everything that I can - I'm down to four. Hopefully down to 2 by the end of 2007.

Eat lots of protein, fruits and vegetables. Try to use as little caffeine and sugar as possible. I find when I get tired, I start craving Dr. Pepper - that's one of my signals that a flare is coming.

I was able to work full-time with 1 to 2 days off during good months, and a variety of techniques during bad months. Sometimes I only worked half days, other times I took Wednesdays off so I would only have to work two days in a row. I took extended leave twice, and I know I was very lucky in that regard. I will be retiring later this month (at age 53), and will start collecting a pension, but I will still need to work part-time. I can contract and work from my home - that's what I'm planning on doing.

Best of luck to you! Another book that I found really helpful (and fun to read) is Inside Fibromyalgia by Dr. Mark J. Pellegrino. Dr. Starlanyl also has a book about advocating for yourself as a fibro patient.

 
Old 07-14-2007, 07:58 PM   #8
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Re: My Life in Fibro Hell

Thank you all for your support and advise... I will look into taking the suggested enzymes are they only available thru the chiro? Currently I don't take anything at all expect for some alka seltzer now and then for the really annoying aches and Heartburn MD which works great for me. My sleep is horrible as well. There is also a Sleep MD but I have yet to try it. I did see an acupunturist and a chiropractic for a bit, but it quickly got too expensive for me. But they did help, my body aches aren't like before. I have a prescription for Cymbalta that I haven't gotten yet. My eating habits are horrible, although I am not one to eat fatty or sweet foods, my meals are very irregular sometimes I only eat once a day or very little through out the day, I don't drink enough water either. I need to work on these areas, I trust that a good nutritrion helps eliminate many illnesses but I find myself too tired to prepare meals. I also need to read more of about fibro I will look online for the books suggested so that I can purchase them, perhaps they will be helpful for my family as well so maybe they'll lay some pressure off of me. I have some questions... How do you all deal with exercise? I find myself woozy when I work out... not like I am going to faint but more of the foggy feeling. One of my desires is to be able to exercise like I used too. There are nights when I dream that I am running and really happy, but in reality I can't. Sometimes in my dreams I have the brain fog too, does that happen to any of you? Well thankyou for reading, I appreciate all your responses.

 
Old 07-15-2007, 08:37 AM   #9
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Re: My Life in Fibro Hell

Yes yes yes - foggy thinking - it's actually got a nickname - fibro fog. The job that I am retiring from requires analysis and writing. There are some days that I just can't think. Literally. When I have a bad flare, all of the systems in my body are involved, but the fibro fog is the last symptom to leave. I have tried to explain this to family and my closest friends. I joke about it, but they know it's real because they see it for themselves - I am so different when the fibro fog strikes. I mentioned earlier that I was on 8 meds at one time - I think this combo was just toxic for my body and contributed to fatigue and fibro fog. Now that I'm cutting back on meds and eating better I'm having fewer energy-related problems.

I know what you mean re/ the expense of massage and acupuncture. Right now I get acupuncture once a week, which costs $65 a visit, and includes about 20 minutes of massage. That's $260 a month, and my insurance doesn't cover it. However, with all of the meds, I was spending about $200 a month on my co-pays alone, and the meds that my insurance wouldn't cover. My goal is to get off most Rx meds by the end of the year.

Here's a quick recipe that might be helpful for you... It's very nutritious and low cal, and has good things for fibro symptoms:

In a sturdy blender, blend together:

1 cup vanilla soy milk
1 cup frozen fruit (I usually use strawberries)
1/2 banana
1 scoop soy protein powder (I get mine from Trader Joe's)
a sprinkle of raw sugar
1/2 cup crushed ice

You can also add Emerg-C or Benefiber, if you need those

I try to have one of these smoothies every day.

That's all for now...

 
Old 07-15-2007, 10:04 AM   #10
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Re: My Life in Fibro Hell

Like the smoothie idea, BUT I have been cautioned to avoid soy products since I take Synthroid. From what I have been told the soy interfers with the absorption or working of the thyroid medications. Just thought I would mention that before getting our thyroids messed up.

Good idea though - can you come up with one that does not have the soy???????

Last edited by sunny47; 07-15-2007 at 10:05 AM.

 
Old 07-15-2007, 05:15 PM   #11
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Re: My Life in Fibro Hell

Hmmmm... I think I saw almond milk in the grocery store, right next to the soy milk. Isn't there also rice milk? Or I guess you could even use non-fat milk...I didn't think of that! There are probably also some substitutions for the protein powder...might want to ask at the health food store...

 
Old 07-16-2007, 05:27 PM   #12
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Re: My Life in Fibro Hell

Recipe sounds delicious!! I am all up for trying to lessen my symptoms with food it is a lot safer than medications. Thankyou for the recipe. I think its a great idea to get off your meds... they only cover up our symptoms for a while. A good nutrition may just be our cure. My acupunturist was $120... sounds ridiculous compare to $65 per visit, I should look into finding another one... maybe others have a lower price. It did however include the 20 minute massage, the rest was spent relaxing with needles in my skin... it was really great for me. It's just so expensive... A friend was telling me that hot stone therapy on the trigger points works great for some of the symptoms of fibro. I am gonna try that too. For how long did you drink the smoothies before you started to notice a change?

 
Old 07-18-2007, 08:38 AM   #13
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Re: My Life in Fibro Hell

I started the smoothies during four weeks of medical leave - that's when I decided to overhaul my whole diet, get of the meds, start the acupuncture. I felt better in about 3 weeks with the whole regimen. Ha! During that time I also decided to retire from my current job, and do contract work in the future. So all of that has made me feel much better. Ideally, here's what I eat everyday - doesn't always work this way, but it's my goal:

Breakfast:
2 wholewheat waffles
spread ricotta cheese on top
1 cup of fruit on top of that
2 TBSP chopped walnuts on top of that

Lunch or dinner: Smoothie

Lunch or dinner: Salad with dark greens and other vegetables, and some kind of protein and starch in the salad. Protein could be cheese, chicken, tuna, salmon. Starch could be pasta, tortellini, etc. I try to use a dressing that I make myself with extra-virgin olive oil, or a low-cal dressing that I get from Trader Joe's.

I also try to drink a lot of water, which doesn't come easily to me as I am a Dr. Pepper addict. I was tricking myself into drinking water by adding a lemon slice and just a bit of raw sugar. I was able to eliminate the sugar - now I just use lemon slice. I still crave Dr. Pepper when I'm tired.

My acupuncture doctor also gave me some oil to use for pain - it's called Kwan Loong Oil. Very pleasant menthol scent, and it works as well as anything topical that I have ever used for lower back and shoulder pain.

I hope this helps! Good luck to you!

 
Old 07-18-2007, 09:32 PM   #14
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Re: My Life in Fibro Hell

I have been dx with fibro for 7 yrs and now am having more symptoms. pins and needles pain, unbalanced, and urination problems to name a few. The docs now think I may have MS, but all the MRI and EMG tests come back negative. I am slowly losing feeling in my feet and it keeps progressing. This all started in May. Is there any relation between MS and Fibro? I don't know what is going on and my docs don't seem to know much more than me.
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Old 07-19-2007, 09:17 PM   #15
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Re: My Life in Fibro Hell

all I know is that MS has more nervous system effects...MS-a chronic disorder affecting many nervous-system functions. one-third of patients have mild,nonprogressive disease. another third worsen slowly. the rest worsen rapidly and on the other hand FMS-inflammation or pain of muscles,muscle sheaths and connective-tissue layers of tendons,muscles,bone and joints...i've never heard of Fibro turning into MS. As for the loss of balance I have that periodically specially in flareups of fibro, I get vertigo and feel like I am gonna fall and the frequent urination mine just started about a year ago, lately its gotten better I drink more water now...frequent urination is also a symptom of fibro...but many other things too. So I don't think there is a connection, but check with your doctor...Fibro is alike many other things. Have you been tested for diabetes? Or do you drink any type of tea?

 
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