Is this common for fm

[jenny259]

I have had fibro for 6 years now.My legs and feet feel like they are on fire.My wrists are sometimes like that also.I also have neck pain like a swollen lymphnode it sometimes gets bigger when it hutrs really bad and when it stops hurting it is not as swollen. The past couple of days even my eyes have been acting up. When i move my eyes i feel like my heart cut flips.

[FurballsMom]

Neurontin is helpful, but the lower the dose you can take the safer it is.  My friend warned me how dangerous of a drug this is and told me about withdrawals a friend of hers went through.

I was told about a supplement that has helped me a lot with the peripheral neuropathy you're describing.  I still get neuropathy, but at a more tolerable level.  So, you may find that you still need to take Neurontin even with the supplement.  The supplement is called Alpha Lipoic Acid.  Swansonvitamins.com has an affordable one that comes in 300 mg doses that is taken up to twice a day.  600 mg is the maximum amount you can take for the day.  I notice that when I take it, it prevents me from getting the debilitating waves of the neuropathy that were stopping me dead in my tracks.  I'm still getting neuropathy even with this supplement, but not to such an extreme as I was.  When I told my doctor about taking this one, she was fine with it and knew what it was.

I was told also about a supplement that I'm afraid to take because of my allergies called Leg Veins.  It is an herbal supplement that the poster told me has helped with her own neuropathy.

She told me about one other supplement that I haven't tried yet that is on the expensive side called Acetyl L Carntine that she said worked really well, too.  I will ask my doctors before I take this one.  I will definitely as the naturopath, too, since she is likely to know more about this one.  My doctors all believe in integrative medicine, so if they know what it is from working around the natural doctors in the clinic, they're usually fine with it.

[Phtartist]

Neurontin has been mentioned to me several times. I should look into it more in depth.

I'm on Savella but weaning off. It helped with my depression but not the FM.  I had side effects on 50 mg including hypertension, insomnia, nausea, etc.  Then again another friend of mine from MedHelp started the same day I did, has FM and sever arthritis and it is working like a dream for her.

Jenny- I do not know how you work the hours you do. Many of us are on disability, so as soon as you can go to 32 hours the better. Its not defeat, its just wise. We only have a reserve of energy, and when that gets tapped, its hard.

I had gotten daily migraines until I started on Topamax. I take 125 mg. a night. It works well for me. Adjusting was difficult.

[bdancer4ever]

I had the burning you describe for years until I suggested Neurontin to my doctor.  It acts like Lyrica which my insurance didn't cover.  
Neurontin numbs the pain at the 'nerve endings' thus cooling me down.
I also tolerate hot weather better now, too.
I take 600mg twice a day.

[jenny259]

I work full time. Ido alot of walking,work long hours.When i get home and my body tries to relax is when it really hits me.Although throughout my work day it is hard to make it through I just keep moving and praying take it one day at a time.I have been there for nine years. I work 50 to 60 hours a week.In a few weeks I'm cutting back to 32 hours a week. I'm hoping this will help me.

I've tried everything lyrica,every antidepressive,muscle relaxers such as flexeril and zanaflex.I have bad miagranes so i've tried topamax,Inderal... Now i just treat the headaches.My nereo has put me on amerge.

I have been going off of my zoloft to start savella.Ihope it works.I have heard some good and some bad we will see.I will start it tonight.
                
Thanks      

[Phtartist]

Sometimes I feel if I keep moving in perpetual motion I'm ok, its when I stop my body starts to feel achy.  
Being active is good for FM. Activity stimulates the chemicals that keep our brains less depressed. Plus endorphins are produced.
I'm not saying get on the treadmill, but go stimulate your senses. Walk and smell the air, hug a puppy or kitten, have lunch with a friend, create something.

When I do my artwork, my mind leaves my pain!

Do you take any meds for your illness?  I am on antidepressants which I find necessary due to the depressive nature of constant pain. Plus I have depression to begin with.
I take Zydone for the headaches and Soma for the muscle pain and spasms.

Baclofen is a very good med for neurological pain. I prefer having that on hand instead of doing a Therapy med you take daily.

[jenny259]

Thank you so much for your advice.Im new here.Iknow that people who do not have fm does not seem to understand how hard is is to deal with this every single day.I thought that this could help me by talking to people who have the same problems as i do.

I have been off all week for vac. and have not been able to enjoy it. I think my body went into shock with not having to get up at 2:50 everymorning.My neck has really been an issue this week. Just absolutley no energy feel like i have been ran over by a truck. Thats how my body feels.

Again, Thank you

[Phtartist]

Yes, I have FM for 12 years and I get burning of the skin very bad on my scalp and forhead, arms and legs.
The lymph nodes inside my collar bone area and down my left chest wall were the ones that swelled to the point that it showed through my clothes. My friends would cringe at the sight. Yes, it hurt but today 6 years after the swelling subsided the lymph thing is barely an issue.  I was told that due to the muscles holding toxins and swelling they constict the flow of Lymph fluid and it backs up. I found it best to use the massage setting on my shower massage. A shower massage is something that I recommend you get.

As for the burning skin. This is a neurological illness, therefore, the nerve endings flare -up causing the burning. The best and only topical thing that has worked is pure aloe vera. It cools it instantly. Do not use something with other incredients in it.

I don't know what heart cut is but eye problems are associated with FM. If you have neck problems that can be related to the eyes. Those nerves go to the eyes. Besides that the eyes are jam packed with nerves.