Seem to have a LOT of symptoms lately. Most debilitating is fatigue. Can't seem to stay out of bed and, of course, the more I stay down, the weaker get. It's been about 3 wks this time. Wish I new the trigger. Also going thru vertigo, vision probs, sun senitivity, light sensitivity, chills and tingling under my tongue and down my left arm. Pain has increased. I have been taking Meloxicam for several months--and it worked beautifully for the "I think I'm coming down with a cold" aches and pains. But it isn't working as well as it used to. Usually I can sort of force myself to gently push one day--light walking, light stretching, etc., and then the next day I am a little stronger. But nothing is working. Frustrated and sad and very lonely.
I feel your pain emotionally,mentally,physically an the fatigue is the worse .I been down myself extremely tired don’t want to get up so tired pain is unbearable an lets say my husband don’t care he gets mad when I’am not well but he forget for 11 yrs I been there to take care of him puts me down every day.have no family support but my son when he is home from college but he is having a hard time excepting his new mom. All I can say my friend life isn’t fair sometimes an believe me I have the poor me lately an feel soooo alone so much going on in my life not good but remember you have friends here who understands your pain an are here to support you.what I do know is I make my husband give me my medication at least 20 mins before I get up if not I can’t move but a shuffle an I have to get up at 4:30 for work. .maybe look into some self help books to make you feel good or even a good book if you like to read I love to read takes me out of my real life my husband hates that to oh well I’am here hang in there I will pray for you always your friend Melissa sending soft hugs
Hi Pamela- I have also been going thru too many symptoms lately, and see that you also have the tingling under your tongue, as I do. Not too many people seem to have that unexplained symptom. I have had much pain in every muscle of my legs arms hands and feet. Feet and legs the worst, and also muscle twitching. I take Tramadol for pain and Klonopin at bedtime for sleep. 5 months with this bout after a year off. Worst bout ever but I have to be positive that it will back off as it has before. And you need to be positive too. Exercise, even light walking or stretching, seems to help us all. Too many good reasons in life to let it defeat us.
Michael
Hello Pamela and welcome. I'm sorry that fibro is taking such a large piece of your life from you. All I can say is that things get horrid for me..and then there are some great days where the pain is fairly low. They are few and far between anymore. I think you do need the rest, even as it seemingly weakens you. I think it also nourishes you, giving you the ability to get back up again on the better days. That's how it works for me at least.
As for your drugs, I often feel like my Lyrica isn't working like it used to...until I forget to take it for half a day, then it's pain central for me. I think the drugs are still working but maybe the pain is so great that they can only sop up so much of it. Or as the drugs work to diminish the pain, the pain gets worse in response.
Pamela, have you had a sleep study done? Many of us with fibro have sleep disorders, like sleep apnea or restless leg syndrome. I know that I had a sleep study done and got a CPAP machine that helped me with my fatigue. Maybe you could have a similar problem and solution. It's worth looking into if you haven't already.
Oh Pamela,
I know! I understand everything you are fighting, and how difficult it is to function in the slightest capacity sometimes. When I am not well, I am down, down on the couch, down in bed. Being arthritic besides having Fibro is tricky, not enough down time is tough on us, too much down time does not allow our muscles to work as well as they should, our joints get stiffer, and it can even lead to premature bone loss.
The first and easiest thing we can do is to take good pharmaceutical grade vitamins. Your Doctor or Pharmacist can help you with these needs. Vitamins and minerals don't solve every thing, but they surely can make some difference in our over all health and energy!
I do hope that your Doctor can work with you, help you to feel as good as you possibly can, with meds and other forms of treatment. We all understand, and we are glad that you posted. We are all here for you!
Wishing you well,
SK
Hi Pamela, I can so understand your struggle !!! My fatigue is also debilitating, I have noticed some relief from Q-10, magnesium & Malic acid & L - Carnitine & I have heard & read a lot about the benefits of D - Ribose all for fatigue. I was prescribed Meloxicam for restless leg & fibro pain, but after reading about the side effects I never took it because of fear of feeling worse. Do you take anything else for fibro ? Like Savella or Cymbalta ? I take Savella & I couldn’t function with out it, one hr after my first Am dose I start having a little more energy…
I also suffer with chills all the time, but more so when I do to much and don’t get my 9- 10 hrs of sleep. I think our immune system is in overdrive and our body just reacts with these crazy symptoms.
I hope you feel better 
Hugs&
Blessings
dee
One thing after having lupus for over 30 yrs is that you must get up and move even just a little bit daily. What you said is very true that about staying in bed is only making it worse so sounds like on some level you know this is true. Isolating also is very lonely and emotionally is very depressing but I know when one does not feel well, last thing you want to do is get dressed up and go out. Do you have any close friends that either can walk a bit with you or even come visit? Even skype or phone calls can help.
I am sorry it has been so hard on you. I really hope you do have some friends and if not maybe counselor in your area can help or fibro support group. But my counselor made me promise to get out for at least 20 minutes in sun daily to just help with my emotional well being and it really does help! You might try art journaling...draw anything and journal about it.
i am really sorry you are having such a hard time and get how hard it is to move when you are depressed and feel horrible. I do hope that you find a way to inspire yourself to move daily so you do improve as you said you do. We are all here behind you and understand how you feel and want to support you and listen to you...i hear you ...you are trying it just is so very hard. Try not to give up, there is hope!
I hear you. Sometimes you have to just break them apart and deal with one at a time. I take my meds and go back to bed. dog wants fed at 7:30, feed , out and back to sleep. being gluten free helped me a ton. It is hard sort but something worth looking at. I have to accept that I will have periods of bad times.Usually they happen when I hit stress or over do the day or it is going to rain. I just make tv plans for those days. I also found that big meals kick my butt. So I tend to eat small meals several times a day.
I also only take one new pill for a week to check for side effects. That is what caused Vertigo a few times.
I also run though the things I am greatfull for. I start with the simple small stuff. I also watch motivation clips on youtube, read to listen to things of my beliefs, Everyday I try to do something for my mind body and soul, some days that takes all day just to get though those things.
Pamela, I can definately understand your thoughts & feelings, as all of us can. My family does not understand the pain or fatigue. I have come to the point that no one does --- except those that have fibro & your DR!
I do think you have to push yourself to move around-. ---I think depression runs "wild" with this disease so it's importatnt to be on an antidepressant & stay away from the stress if you're able to. Something funny on TV has helped me also.
I thank God for my animals-----It seems they too understand:).
God Bless you & KNOW you are not alone!!!
Aleta
Hi Pamela
I feel your frustration!!! My life currently seems to be - go to bed, get up and a couple of hours later I get back into bed (literally so fatigued and i can barely keep my eyes open)
I suffer with vertigo regularly also.
I’m sorry I can’t make you feel any better - but please know that I am thinking of you and more than that - completely understand you!!!
Big gentle hug
Bev
First of all, welcome, Pamela! I am glad you are here, where friends can be found - the kind who understand what it's like to deal with fibro and all its aspects.
I am so sorry to hear that you are going through so much. Wow! Some of them are very familiar to me. Have you seen an opthamologist or optometrist to see if vision problems need to be addressed? I found that my optometrist needs to adjust my glasses with a special prism to help my eyes coordinate..My vision has been affected by eye muscles not coordinating. It makes me very dizzy when that happens
I also ordered non-prescription sunglasses from my optometrist. Although many places sell sunglasses, they can have distortions. I love the glasses, and they were not expensive. I even wear them at church when the lights bother me. (Not one person has asked why or been judgmental about my wearing them!) When the lights are dimmed, I even use them in the semi-darkness to watch TV. It seems to help with glare.
I hope you tell your doctor what is going on. You may be having migraines or needing a change in medication.
Meanwhile, I am sending you soft, gentle hugs to encourage you to persevere. You have defined the symptoms you have dealing with in an organized manner. I am very impressed with how well you do that! Many people just go to the doctor and say gee, I'm feeling worse. Now you can use that organized info to communicate to your doctor. I hope you see your doctor soon, so they know what's going on.
Keep us posted!
Hugs
Scribelle
Thank you Melissa. I know what it is like to have a Husband not understand. I am no longer married partially because of Fibro. But I am OK on my own. Have a roommate which helps somewhat. Soft hugs back to you!
You are so right Michael. It does back off eventually. Got out a little this weekend. Light walking and stretching is the best for me during a flare. A little more strenuous exercise is good when flare is over. I love exercising in a warm pool.
Thanks Petunia.. I did do a sleep study years ago, but they had me take my sleeping pill. Duh! Pretty sure I don't have apnea, but ex husband told me I thrash around alot. Went camping with my sister once and she thought I was having a convulsion and woke me up. LOL I tried Lyrica, but did not give it much of a chance because I slept round the clock with it. Hehe .....you are so right about the Meloxicam...forgot to take it 2 days. Owwie!!!! Just going through a flare. Need to be patient and give myself permission to rest.
Aleta... You are right about the depression. I do take Effexor XR, but my digestive system is whacky and sometimes I think I don't get the full benefit of my vitamins and meds. I am working with a gastroint.....(sp?)interologist LOL and am taking probiotics and miralax and prilosec for hiatal hernia. Hard to keep everything in balance. I am also eating the best I ever have...hoping results will show soon. I have a little Pomeranian. Thank God for her too!
Thank you Bev. Gentle hug backatcha!!! Mentally better today.
A little frustrated with my GP about migraines. Eye dr said I was having "Migraines without pain" which were causing some of the probs Told my GP and he said "Keep it under your hat....I have patients who suffer with REAL migraines. Wasn't too happy with that remark. I'll have to have a chat w/ him next time I see him. Hoping it was a misunderstanding on my part, because usually he seems to understand Fibro....his wife has it. He seems pretty informed about pain issues.....not so good with fatigue and weird symptoms. I think some Drs. don't get the central nervous system involvement. The Wikipedia site for Fibro still says some Drs believe it is somatic, even tho the patients themselves disagree. Sigh! Knowledge of this disease has been a long time coming and we still have a long way to go. MS gets a lot of funding and research....Fibro mimics it enough to make us miserable but we really need lots of research to figure out why.
Thank you Tammy.. hugs and prayers coming back to you!
Yes. I believe our immune system is in overdrive too. I haven't had a cold or the flu in years and my grandkids expose me to germs all the time. I don't know what Savella is. What side effects of Meloxicam?? It works well for the cold/flu everyday aches--not for muscle spasms. I use Soma if I get a spasm that sticks around for awhile. I was taking thyroid, which an alternative doctor presribed...not the synthetic...the real pig thryoid stuff...can't remember the name. Had great energy, pain was gone, but had major sleep problems insomnia for a long time. I moved to Reno...got a new doc and he had a fit ...said my labs showed thyroid was too high and I was going to give myself a heart attack>>> Acted like I was taking speed or something. Anyway scared me enough to go off it and haven't been the same since. Stuck in the place where I don't know which doctor to believe. Sound familiar to anyone?. The Alternative Med doc put me on the thyroid because of Symptoms, not blood work which showed I was in the low/normal range. Its too bad I no longer trust the med because I was exercising in Reno's heated pool 5 days a week and up and out of bed.