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Joan

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Joined
Oct 13, 2013
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3
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00/0000
Country
UK
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Lincolnshire
I've had fibromyalgia for 7 years although its only been formally diagnosed 4 months ago. I find it hard to accept that I'm never going to get better:-( but I have to :x so I've joined this site in the hope it will help.:smile: my life is constant remissions and relapses the worst thing about this for me is that every time I think I'm better (the pains a dull ache that I can ignore and just the odd sharp pain) I get worse my hair falls out more rapidly and the sharp crippling pains move throughout my entire body, I get so tired I sleep deeply all day and night and am still tired on waking. At times the pain has made me unable to walk and even feed myself (it's heartbreaking to have someone offer to feed you). I can't do the things I want to do any more and it's so hard to accept, every so often I plan for my future only to have it snatched away by this agonising illness.
 

akajbart

New member
Joined
Oct 13, 2013
Messages
3
Diagnosis
02/2013
Country
US
State
Indiana
Hi Joan,
I understand how you feel. I'm new to this site as well, as of today. I have kids and my family is very active and it's so disturbing that sometimes I just can't go to my kids soccer games or a basketball game. It just breaks my heart. I can't remember the last time I had just 1 whole day where I didn't complain about an ache or pain. I feel like my family has become numb to my complaining. They feel bad, but can't do anything to help so they just ignore it. It's so sad.

Are you taking any meds? I'm trying to figure out which meds help, and which meds don't help. Not to mention I work full time and have to be in a good mental status while I'm there. I can't take something that'll make me stoned at my desk.

Good luck, here's hoping for more good days than bad.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Joan,
Welcome to the forum. I have heard so many of the members talking about hair loss and I wonder if it is a side affect of a medication you are taking. When pain and fatigue keep you from being active, it is easy to see fibro at work in those complaints, but hair loss seems to be a bit more than a symptom of fibro.

As above mentioned, I think you may need to talk with your doctor and discover a new game plan for dealing with your symptoms, thus maybe medications should be looked at and changed. So often we worry about changing our medications. We worry about getting use to another new med, or the doctor thinking we are out looking for stronger drugs. Fear of what if, can keep us from realizing that may be the drugs we are taking are doing more harm than good.

I have been there. Trusting my doctors and letting them tell me that side effects were not that big of a deal. I went through a stretch of time being over medicated and too weak to stand or walk, falling constantly and with bad brain fog. I spent days in bed, and when I would question my meds the doctors gave lame reason for sticking with these drugs. Weeks went by and finally I was able to see a doctor who would listen and get my doses lowered and got me off the bad medications.

Not cured but finally I was able to enjoy life and get out and see my friends and family. I hope you will tell us more, for several members have talked about different side effects of meds and other choices you might ask your doc about. In the mean time I hope you will read lots of back posts on the different topics and ask more questions. We try to be supportive and answer questions with helpful repies. Please continue to come and join in on the forum activities. Also I hope you feel better soon! :)
 

Joan

New member
Joined
Oct 13, 2013
Messages
3
Diagnosis
00/0000
Country
UK
State
Lincolnshire
Hello 1sweed and akajbart
Thank you both for your replies its great to see people understand how much the pain, fatigue take away your life.

I've been given cymbalta by my rheumatologist but I haven't taken it. I really don't want to take an anti depressant for pain, the side effects out weigh the benefits of these drugs in my opinion. (My dad has bi polar and has been on these medications)

I do however take Co-codamol and I'm on thyroxine for under active thyroid also calciferol for viamin d deficiency. I have refused medication for polycystic ovaries I really aren't keen on taking drugs.

When i have a flare up i get through it with Co-codamol, lots of sleep and living in pyjamas because their a light fabric. I'm also lucky as my family make things easier on me by doing the household chores etc so all i have to do is get through the day. I recently got a tens machine to try but the pain is not in one place long enough to use it at the moment.

As for the hair loss I was originally told that it and all my symptoms were because of my thyroid then they said it was the vitamin d deficiency making me so ill then they said fibromialgia was the culprit. I've given up on specialists and when i see my Rheumatologist in January I'm hoping he'll sign me off.
 
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