Fibromyalgia - Killer of life.

[Dogman]

Everyone should be aware of fibromyalgia. If you mate should acquire this disease your life as you know it will end.
There are risk factors to contracting fibromyalgia such as rheumatoid arthritis, a traumatic injury, genetic predisposal, and autoimmune disorders like rheumatoid arthritis and lupus, although fibromyalgia itself is not an autoimmune condition. There are 10 primary symptoms in in short the disease strikes the nerve ending of causing severe pain. My wife's pain is mainly in her back, ankles,feet and hands, to the point that she can barely walk or hold silverware. DO NOT TAKE FIBROMYALGIA LIGHTLY! Most doctors do not know how to treat or determine if you have fibromyalgia. From our experience a low carbohydrate diet will help relieve the pain, but will not cure the problem. Things that have helped light therapy UV light in the 600 to 850 range can be purchased on Amazon, I bought her a scooter that helped me not having to run to get or take her everywhere in the could. She is 66 I am 65 I fear that she will be in a resthome in her early 70's. Retirement is definitely not living the dream. Just surviving!

 

[bloom2708]

Read this book:

https://theplantfedgut.com/book/#:~...your health by optimizing your gut microbiome.

Fix your gut microbiota with lifestyle/food.

 

[Born2BRetd]

Hi Dogman,

I've heard that undertreated thyroid also can play a role in Fibromyalgia. Have you looked into that?

 

[Dtail]

Sorry to hear about this issue affecting your wife.
I hope some wise folks on this site have heard of helpful things to alleviate some symptoms.

 

[Dogman]

Hi Dogman,

I've heard that undertreated thyroid also can play a role in Fibromyalgia. Have you looked into that?

Thank you for your concern! We have looked into almost everything possible. My wife had a para-thyroid removal of three of the four para-thyroids which we personally believe caused much of her issues with the fibromyalgia. She also has had severe osteoporosis last fall her mobile phone fell out of her hand onto her foot and broke three bones. That was the impetus for the fibromyalgia to move in. Since then her walking has been down hill. For both men and women keep a check on your bone density scores, have the doctor order a bone density test! This is very important. My wife is in the negative.

 

[ivinsfan]

Well my BF of 40 plus years has suffered horribly from this for at least the last 15 years. The first two posters mean well, but I can you my friend find comments like that maddening and offensive. And she get them from everyone, all the time.

Check your thyroid, fix your gut health..if you actually had this condition you would know you and your family would move heaven and earth to try and get to a place where you can find some semblance of normal life.

The poster is sharing that this condition has made their life as a couple difficult and he is worried about what the future will bring. OP hopefully your spouse has some good days, but I know personal experience about the sleepless nights, the constant changing of plans and a lot of times the depression that comes from this life robbing condition. You new normal doesn't feel very normal or hopeful. Keep your friends and family close and the caregiver needs to be able to have a life too, that's been the hardest balance for my friend and her DH to achieve.

It's hard not to let worries about the future rob you of enjoyment and peace in the present, just take one day at a time for now.

 

[Born2BRetd]

I was also going to mention parathyroid but didn't want to overwhelm you. Sorry the parathyroid removal didn't resolve issues.

Have you looked into food allergies? Food allergies can create inflammation. I have celiac and have been gluten free for a long time. Whenever, I inadvertently eat gluten my finger joints swell. A year ago my knee, shoulder and elbow joints became tender. I tried different things that didn't work and finally asked the doctor for an allergy test and found out that I was allergic to peanuts and sesame seeds. It was a sad day when I had to stop eating peanut butter but that did the trick and my joints are happy again.

 

[Dogman]

Well my BF of 40 plus years has suffered horribly from this for at least the last 15 years. The first two posters mean well, but I can you my friend find comments like that maddening and offensive. And she get them from everyone, all the time.

Check your thyroid, fix your gut health..if you actually had this condition you would know you and your family would move heaven and earth to try and get to a place where you can find some semblance of normal life.

The poster is sharing that this condition has made their life as a couple difficult and he is worried about what the future will bring. OP hopefully your spouse has some good days, but I know personal experience about the sleepless nights, the constant changing of plans and a lot of times the depression that comes from this life robbing condition. You new normal doesn't feel very normal or hopeful. Keep your friends and family close and the caregiver needs to be able to have a life too, that's been the hardest balance for my friend and her DH to achieve.

It's hard not to let worries about the future rob you of enjoyment and peace in the present, just take one day at a time for now.

Ivinsfan - Thank you for your kind and informed words. Yes, you know exactly what is occuring on a daily basis. Just knowing that other people also understand the depression, loneliness, and issues surrounding fibromyalgia helps. I did not mean to be so depressing but your kind understanding does help. Thank you!

 

[ivinsfan]

It's a depressing situation and depression is normal here, so no apologies necessary. We went on a couples vacation with my GF and her DH. She really struggled but kept plugging along. We finally hit a day when she was literally staggering along the sidewalk getting back to our car. Used her arms for balance because her feet felt so unsteady. I was so concerned and then I noticed the looks we were getting from others, pretty sure they thought she was drunk in the middle of the day. This is life with that horrible condition, it breaks my heart..

 

[Born2BRetd]

Hi Ivinsfan,

Typically, when someone posts about a medical condition I bite my tongue and don't say anything because I do know what it is like to have someone suggest treatments that I have tried and/or have decided I'm not interested in. However, Dogman sounded pretty down about his wife's future that I decided to go ahead and make a few suggestions. The other reason I posted is even if my suggestions are of no use for Dogman someone else may see something here that could help them.

 

[ivinsfan]

Hi Ivinsfan,

Typically, when someone posts about a medical condition I bite my tongue and don't say anything because I do know what it is like to have someone suggest treatments that I have tried and/or have decided I'm not interested in. However, Dogman sounded pretty down about his wife's future that I decided to go ahead and make a few suggestions. The other reason I posted is even if my suggestions are of no use for Dogman someone else may see something here that could help them.

These sometimes unseen conditions for some reason seem to bring on lots of comments from lay people...maybe because they seem so mysterious. I will say that because of the negative impact these comments had on my GF. I make it my personal rule to not give medical advice to anyone. Just my sympathy and concern.

 

[MRG]

I watched a coworker trying to deal with this condition. I remember her as full of energy and life then a few years later she was struggling.

Best wishes for you and your wife.

 

[O2Bfree]

So sorry to hear about your situation. I hope you can find some relief from your cares from time to time. Some folks say being a parent is the most difficult job in the world, but being a caregiver for an adult loved one may well top that.

 

[audreyh1]

Wow, that’s very sad. There are so many conditions not understood well by medical science such that they don’t know how to treat it.

 

[daylatedollarshort]

I was like that once. Don't give up. Keep seeing different practitioners and keep trying different diets and alternative therapies. It took me a few years and I never got to the point where I could run marathons, but I can hike and do yoga with just some aches and pain now and then. You can pm me if you are interested in what helped me.

 

[W2R]

It's a depressing situation and depression is normal here, so no apologies necessary. We went on a couples vacation with my GF and her DH. She really struggled but kept plugging along. We finally hit a day when she was literally staggering along the sidewalk getting back to our car. Used her arms for balance because her feet felt so unsteady. I was so concerned and then I noticed the looks we were getting from others, pretty sure they thought she was drunk in the middle of the day. This is life with that horrible condition, it breaks my heart..

So sorry to hear of your friend's very serious condition and struggles. I hope she will consider using a walker, if these serious balance problems persist, which I gather is to be expected. Bad falls can make a bad situation even worse.

(Yes I found that out the hard way)

 

[ivinsfan]

So sorry to hear of your friend's very serious condition and struggles. I hope she will consider using a walker, if these serious balance problems persist, which I gather is to be expected. Bad falls can make a bad situation even worse.

(Yes I found that out the hard way)

Walkers don't really help due too numbness on her feet...it's probably leading to a wheelchair at some point, hopefully before she has an injury.

She has some better days which makes it hard to think about the wheelchair.

 

[tmm99]

So sorry to hear about this. A woman I used to work with in 1990s was diagnosed with fybromyalgia in her early 30s and she went on disability as she was pretty much immobolized for a while. She told me that her doc thinks it started when she fell on the rocks at a river one summer. That was the first time I ever heard of this affliction. My neighbor (in her 20s) a couple of decades ago was pretty much bed-ridden for a while with fybromyalgia as well, but in her case, her mom told me that she was having more and more better days with some kind of steroid treatment. I think she also mentioned Guaifenesin, but I cannot remember the detail...

I hope you will find some good treatment that works for her.

 

[Rushmore]

I’ve had fibromyalgia from at least my early 20s. For me it ebbs and flows. While I never think I got back 100%, I do have better times. Let’s hope you’re wife’s gets better

 

[Born2BRetd]

Dogman,

Please remember to take care of yourself. About 12 years ago my husband was seriously ill for over 4 years with a rare supposedly incurable autoimmune disease that almost killed him and me in the process. On top of that just like now we were in uncertain times with the economy, fires (most of our neighborhood burned down) and the cost of paying out of pocket for treatment. Why is it that the treatments that really work are never covered by insurance? A cruel joke, I'm sure.

The stress of watching a loved one suffer in constant pain is incredible and a part of me wanted to die along with my husband. One of the reasons I retired early is because I ruined my health taking care of my husband. The cumulative effect of all the stresses caused my own health issues later. So, even though this is the kettle calling the pot black, try to do what you can to ease your own stress.

Also, thank you for sticking around for your loved one. If you're like me, I'm sure you don't want to be thanked for doing something that doesn't seem exceptional but I definitely witnessed online plenty of people whose loved ones didn't stick around or if they did stick around resented them or were unhelpful.

 

[Bamaman]

There are two especially bad things about fibromyalgia. (1) There's no test to diagnose it. (2) It's too easy to fake for frauds trying to get on social security disability.

Doctors go thru a list of symptoms asking about your sleep patterns, how you hurt and if you hurt here, here, here here. At the end, you may or may not have fibromyalgia.

My wife has suffered from it for years, but her symptoms are not there all the time. It comes and goes.

And to the folks (mainly women) that have fibromyalgia, you need a really good neurologist to document your condition and find some relief..

 

[Lucie]

As a pain psychologist/pain coach with over 30 years of experience in the field, I understand how painful and challenging fibromyalgia can be. I have worked with hundreds of fibromyalgia patients to manage the pain and increase the quality of their life. Unfortunately, many healthcare specialists either don’t believe in fibro or they tend to perceive those who suffer from it as emotional basket-cases or “damaged goods”. This doesn’t help and often results in lack or medical care or understanding.

I would recommend a good pain clinic and a pain psychologist or coach. A pain psychologist doesn’t mean that the pain is in your head, it means that the pain is having a significant impact on the quality of life, including mood, sleep, relationships and daily functioning. A good psychologist will help you manage these factors, reduce flares and improve your mood and quality of life. Be careful of (nonpain-trained) therapists who tell you to “push through the pain” as this will only make it worse. I wish you luck in finding relief. Feel free to PM me.

 

[ckelly78z]

My wife of 32 years has had FM for a few years now, and has days that she can barely function, but she pushes ahead, and still works full time for a local home builder as a project manager doing job site visits, and coordinating contractors. She has figured out how to minimize the effects, but not eliminate them by using her essential oils, and CBD oil when needed (not as a daily regimen).

I wish you, and your wife luck in finding some ease of her discomfort.

 

[BuysToys]

I also suffer from fibromyalgia. You have my sympathies. I know just how hard it can be to feel OK one day and then barely be able to move just hours later. It just sucks.

 

[Blueskies123]

I debated adding my comment and finally decided to go ahead. While I do not have FM I have a different condition that makes it difficult to leave the house for weeks at a time due to chronic acute pain. My comment is that these threads make me realize I/we are not alone with debilitating medical conditions. I see the stress this puts on my marriage so I cannot talk about how I am feeling with anyone. Doctors think I am just looking for narcotics.

You are not alone.