Kinda newbie still curious about a lot of different issues

I was just diagnosed with FMS by my pain management doc a few months ago and have read what little i could find from articles online but have had little to no time to talk with someone who also deals with FMS and its related conditions and there is not a FMS and Fatigue Center anywhere close near here and my pain doc is far enough its a good thing financially that I only go to my pain doc once a month to ever 2 months....but the max he can do is put 2 trigger point injection shots in my neck (along with checking up on on the meds he prescribed me to make sure i dont have any side effects or questions pertaining to them) but that is alot of money for gas and ect. just to b in the office for what 5mins and i also have other FMS related symptoms but i talked to mom about me sing a FMS and fatigue center doc and she said no that i wouldnt need it for me to just learn everything i need to on my own and that would be all i needed.....so first off for all who dont know me and would like to im a 21yr old female, i have always had medical issues with having been born with Spina Bifida a birth defect where my spine and bones surrounding my spine did not fully develop (if u wanna know more about SB u can always look online or get to know me its hard for me to put my life in a nutshell LOL) anyways i am wheelchair bound and have always had bladder/bowel function problems but i have lately had either really runny bowels for days on end or constipated and more sore lately im having really really bad Colon spasms whether im having diarrhea or i seem constipated. and its getting very very frustrating. also a very huge problem im having trouble with my sleeping...there are days that im practicley sleeping in bed for 48hrs at a time and i also have low blood sugar and low blood pressure problems if i dont eat or drink every so often ..so after my "48 hr nap" of course im weak and everything.. but regardless if i sleep my normal 8-12hrs a night i wake up the same way.. some days more so then others but on my regular nights when i wake up my blood pressure and blood sugars are fine but i still feel more tired then i did when i basically passed out to sleep and its getting in the way of my everyday life very much so now so recently i dont have an "everyday life" im secluded from the rest of the world...and ive done everything i can to think of to stay away "diet exscerise energy drinks ect." and nothing seems to be working at all. Also on the energy drinks note.. i dont do energy drinks often at all but i do drink alot of Cokes.. ive only read it once and very vague that caffiene is not healthy for someone with FMS but not the exact reasons and side effects of the combination......ok 1 last thing when ever i brush my hair or even touch it i have clumps of hair come out ive heard its symptom of hypthyroidism especially with woman at my age and would like to know any ways to get help with this like who to contact and what to watch out for or things about my daily life i can change plz and ty...sorry all this was alot i just didnt know how to mention everything in separate pieces but but also as a whole other then to just let it all out LOL

Dear Corinne. I am so sorry that you are having such a bad time. I have had bowel problems like yours for the past 2 years although FM only recently diagnosed. I discovered that checking my diet and excluding gluten gave relief from the runny bowels and spasms. The constipation was made worse by the pain meds that I take so I try to manage without them. My Dr has now put me on a small dosage (20mg once a day) of amitriptyline. Apparently this is the 'gold' standard treatment for FM here in the UK. Have now been taking it for 6 weeks and although it hasn't done much for most symptoms, I am no longer need to empty my bladder every hour and the constipation seems to be righting itself.

As for your long sleeps.....LOL, Rip Van Winkle could have taken lessons from me for the last 2 years that I was working. I woke up tired and by lunchtime I could have slept on a clothes line if there had been one handy. I came home and immediately after my meal I had to go to bed (7 pm) because I was so tired and everything was so painful that I was climbing the walls. I regularly had 'long sleeps' all weekend long. It was the only way that I could cope with the week. My husband helped by waking me at regular intervals to make me have a drink or some soup. It helped with dehydration. My hair also started falling out. The shower drain would be blocked with it. Tests showed that there was nothing wrong with my thryroid. The problem turned out to be stress. I'm sure that you can relate to that too. I found that some relaxation tapes helped quite a bit. Whether or not this is the cause of your problem you may find that this helps somewhat with several symptoms including pain. Most of all, remember that you are not alone. I'm sure that the members here with have lots of valuable advice that you can try but one thing I have learned is that there is no such thing as a 'one size fits all' solution. Don't be afraid to tell us how you feel even if you are at your wits end. I know that it is difficult but it is important that you try to stay strong.

http://chronicfatigue.about.com/od/copingstrategies/a/energyenvelope.htm

Dear Corinne,

This may help a bit with the energy, and a book by a Dr is also mentioned.

Hope that you are feeling better very soon!

Wishing you WELL,

SK

http://www.youtube.com/watch?v=jn5IBsm49Rk

The energy envelope reminded me of the spoon theory. The young lady reading her story also has CFS, and Lupus. She has written many books and is a patient advocate.

Thanks for sharing this link SK. I have to say that when I feel good, the 'all or nothing' approach is so typical. Yesterday my husband actually said to me, 'At your age you should have learned to pace yourself'. I won't repeat my reply but of course he was right. lol I've book marked this link to remind myself.

Hi Cori,

I just found another video entry by Kelsey. She has FMS and CFS, you can go to the top of this page, click media and see her videos. One of the products that she says has helped her is Immunical, here is a link to the ingredients.

http://www.immunotec.com/IRL/Public/en/USA/ShowItemDetails.wcp??&Item=00010000&site=CALIFORNIA

http://en.wikipedia.org/wiki/Glutathione The last link here is a definition of the ingredients.

This is to boost the immune system. If you are considering it, please make sure to speak to your Dr.

Hope this helps.

Sending you my best,

SK

Hello Corinne and welcome to this site. I'm sorry about your multiple medical problems. We here understand your fibro issues and can commiserate with you.

I do know that irritable bowel syndrome is a side-effect of fibro, so you really should talk to your doctor about what you're suffering. Honestly, you should be checked for other things too. I was having a lot of the same symptoms and had a stomach ulcer, thanks to too much ibuprofin. Like you, i drank Coke and a lot of it. I will say that I've stopped drinking it because it was bothering my stomach. My sister also quit and said her stomach stopped hurting after kicking the habit. Honestly, I suspect that the Coke is aggravating your other digestive issues.

I think that isolation is a real concern that people with fibro face. It's good that you come here to talk to others who understand. I honestly don't know what to suggest about this, as it seems that when we have to sleep, we've got to sleep.

I do think you should also see a doctor about the hair coming out to rule out any medical issue. It doesn't seem normal to loose clumps of hair.

Please feel free to post here regularly and contact us individually, myself included, if you need more help.

Gentle hugs,

Petunia