Fibromyalgia: How do you cope?

Posted by sandymom @sandymom, Mar 8, 2019

Since 1983 fibromyalgia has cost me my job home life. Daily struggles. One day up next down. What to do to cope? See psychiatrist med nurse pcp etc. let me here your story the sufferings this has caused. Any help please!

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@lioness

@rwinney Have you asked about Reynauds sendrome With hands and feet turns ng color and coldness might be this

Jump to this post

Yes, I have. Thank you for the suggestion. Last spring I had a bout with terrible, itchy sores and skin irritation which was at the same time the discoloration and freezing began happening. Saw my PCP, dermatologist, vascular and neurologist to finally rule out Raynauds, diagnose Chilblains and neuropathy.

REPLY

@rwinney Glad you had that diagnosis . It has to be frustrating to have something and no diagnose.

REPLY
@rwinney

Autonomic neuropathy impacts small nerve fibers which prevent nerves from expanding properly. Check it out for yourself. I was always concerned I was premenopausal but no it's SFN and miserable. Opposite is my feet which blood vessels dont contract properly and they turn all shades of purple/grey/red and freeze. Hands freeze too.

Jump to this post

I am constantly freezing. Sometimes my feet feel like I soaked them in a bucket of ice

REPLY

Hello @dianecostella, welcome to Connect. I hear you on the ice bucket feet. Have you been diagnosed?

REPLY
@rwinney

Hello @dianecostella, welcome to Connect. I hear you on the ice bucket feet. Have you been diagnosed?

Jump to this post

I have been diagnosed through a skin biopsy. My bladder stopped functioning in 2014 necessitating the need for bilateral bladder stimulators this with chronic constipation and not being able to regulate my body temperature has led to a diagnosis of autonomic small fiber neuropathy.

REPLY
@dianecostella

I have been diagnosed through a skin biopsy. My bladder stopped functioning in 2014 necessitating the need for bilateral bladder stimulators this with chronic constipation and not being able to regulate my body temperature has led to a diagnosis of autonomic small fiber neuropathy.

Jump to this post

I'm sorry to hear of your autonomic small fiber diagnosis. Regulating body temperature is no fun. I used to use microwavable warm (not hot) packs and wrap up my feet, plus rubbing them with my hands to promote circulation. A warm tub or shower soak also helped along with warm fuzzy socks and sherpa lined booty slippers.

What tactics work for your cold feet?

REPLY

I usually put on socks and Sherpa slippers as well. It can take a couple of hours before I am comfortable. I dread the winter.

REPLY

I warm my feet under running warm water and then put the socks on. A basic foot massage will also help blood flow to get feet back to "pink." So, warm up your feet and then socks. I also use my hairdryer's warm air down my shirt and pants to get rid of the shivers. A fleece vest seems to keep my temperature in check.

REPLY
@rwinney

Have you ruled out neuropathy via skin punch biopsy? I had many symptoms that mimicked fibromyalgia but the Rheumatologist said nope it's not that. Later I was diagnosed with Small Fiber Poly Neuropathy with biopsy. You spoke of symptoms I've had all along. Redness of face/neck/chest, tender scalp, inconsistent body temps. I sweat if I fold warm laundry and have a hard time acclimating between temp changes...neuropathy characteristics. Also, I've read that Fibro seems to cross over to SFN. Just a thought.

Jump to this post

Oh gosh just stumbled on this older thread/message. Had flushed cheeks starting almost year ago which turned into 8/10 pain on and off every day from half to five hours and found a web site where they discussed SFN and case of woman with flushed face etc. I dont mind the red face, nose, but its the PAIN with it and going into neck chin ears top chest....waited 5 months to see dermatologist and he has no diagnosis and 7 months to see neurologist end of April and along with other health issues really getting me down.... dermatologist mentioned a cream for face but said shot in the dark... so am counting on neurologist and printing your comment and the web site I found....I have p.n. from taking a quinolone drug for uti, but mild enough no meds, from elbows down and knees down , never connected my burning face with neuropathy though.... and although flares with stress i have trouble convincing others its not causes by stress; years ago told had fibromyalgia and for last few years spent most of my time lying on my bed as no energy and could go on but realize we are all suffering.... so gald I found this post might be the clue have been looking for! J. p.s. sometimes burning is without the flushing

REPLY

Hi very sorry to hear. I have suffered with FM for about 40 years and been through every sort of practitioner from Acupuncture onwards. I also had to give up work and it has put a big strain on family life. Sometimes I go to family social occasions suffering terrible pain and feeling awful but it is also terrible to miss niece's/nephews weddings etc. Massage sometimes helps. I have used amitripelene for about the last 26 years. I am in the process of joining an online 12 week program called More Good Days based in Australia. Not expensive. I just read a good book called 'Why Does It Still Hurt' which shows that when there has been an injury the brain becomes over protective (maladaptive neurology) I think they refer to it as and even thinking of anything similar to the original injury, can set off a pain cycle. They also think that therapies that can change the brain's thinking like meditation, hypnotherapy etc are more likely to help than physical approaches. Another good book is 'The Brain that Changes Itself' by William Doidge. So much more but hope some of that helps. regards Pam

REPLY
Please sign in or register to post a reply.