← Return to Living with Neuropathy - Welcome to the group

Discussion

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 4 hours ago | Replies (5974)

Comment receiving replies
@summertime4

I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed as idiopathic???. I don't agree and very few tests have been done to prove otherwise. I believe idiopathic is used because it is easier. I feel other things are going on. My question is has anyone with neuropathy found that towards morning light you are awakened by the feeling that your entire body, including face, is engulfed by hot water running through every fiber of your body? I cannot go bed to sleep once this process starts. I almost feel like my breathing is difficult. This along with the numbness in my legs and cramps so bad in my legs and now up the entire leg. I do get up and when the cramps slow down I get in the shower. My anxiety is then over the top. I don't know if these episodes are caused by anxiety or the anxiety is caused by the episodes. This has been going on for almost a year. I have been prescribed Lexapro 5 mg at night to help with anxiety. Well, that's not working. Medication before bed is 5 mg lexapro, 50 mg Elavil (for neuropathy pain) and 600 mg gabapentin. I am now taking 10 mg melatonin for sleep along with 1/2 dropper CBD. Daytime meds 40 mg lasix. 37.5 effexor That is 5 meds prescribed and 2 prescribed by me. I also take (almost forgot) percocet as needed during the day. This may be 2 1/2 the entire day and none taken at night. I don't know. I see my doctor tomorrow and she will "I don't believe it is the medication. OK so what is it and what recommendation do you have. I am really concerned because I am not going to bed until 11 pm and waking every hour or two until about 5 am. I don't want to go to bed at night. I don't want the process to start all over. It's not that I don't want to wake up in the morning. It is that I am worn down from the process. I am now having fears of the nightly and morning episodes. My day gets better and I try to forget it happened. I am getting really messed up here. The neuropathy is kicking my butt with difficulty walking and severe numbness. I am not seeing a neurologist and the neuropathy was diagnosed by pain management by doing the nerve conduction test. Thank you.

Jump to this post


Replies to "I am asking help from you all. I have fibromyalgis, peripheral neuropathy and lymphedema. All diagnosed..."

Hi @summertime4 -- I have small fiber PN and lymphedema mostly in my right leg but some in my left leg. I only have numbness so am not taking any meds except 2 for high BP/hypertension. There are a couple of discussions that I think might be helpful for you. The first one has a great YouTube video that provides a lot of explainations and the second one is where members are sharing what has helped them.

> Groups > Neuropathy > Small Fiber Neuropathy lecture (Small Fibers | Big Pain - Dr. Anne Louise Oaklander)
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-lecture/

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

I'm so sorry to hear this and relate to most everything you say. First things first...find a Neurologist pronto. Pain Management is not Neurology and it's my opinion that you need better guidance and a more clear path forward. Im rooting for you. Keep us posted and good luck.
Rachel

@summertime4
Hi,
I was curious what dose of Melatonin you started on or if you started on 10mg.
Generally speaking, less is usually best. Taking more than you need can backfire and cause insomnia.
Here's some tips to help improve sleep.
Your Anxiety is probably your worst enemy in preventing a good night’s sleep.
Try taking a hot bath or shower, it will help relax your muscles. When I was going to the gym and using the Sauna and Stream room I slept like a baby.
If you go outside in the sun it helps our bodies know when to produce Melatonin.
Go to bed and get up at the same time.
Sleep in a dark, quiet and well ventilated cool room.
Stop drinking caffeine a few hours before going to bed. Stop using computer phone and tv. Relax awhile before going to bed. A weighted blanket helps increase melatonin by increasing certain hormones in the brain.
Magnesium increases melatonin levels, spinach is a good source of magnesium. Electromagnetic Fields reduce the production of melatonin as does smoking at night.
Take care,
Jake