Fibromyalgia - Killer of life.

[Rushmore]

Blueskies123. I so get it. The greatest gift someone can give me is acceptance. I look fine and sometimes I seem fine(although that is usually an act..there’s never a day that I feel fine, but some are better than others). I read on a couple of support groups and that helps a lot to not feel so isolated.

I have a lot of people around me who don’t recognize it as an illness. Who feel I am faking. Who think it is just the minor annoying aches and pains of life. Who think I am seeking attention Believe me if I was I’d do it a different way. Who don’t get that some days I can do something and the next day I’m in bed with heat or ice all day.



I’ve had doctors ask if I’m seeking drugs. That it’s all in my head. My current dr said “you know some of us don’t even think this is a real disease”. To which I asked “do you?” There was a pause but he said he did. It’s a fairly small town and I don’t have many options, since no one really treats it I just don’t talk about to the dr. I find it hard to sort out wether my say chest pain is fibromyalgia or am I having a heart attack. Figure I’ll miss something big.

Keeping a routine seems to help. No more erratic sleeping like staying up till 3am reading a book. Fall is typically a flare time for me. Ive been meeting friends on Monday evenings through the summer at a park. I couldn’t go Monday because it was a particularly bad day. I was really bummed because there aren’t many weeks left that we can meet before it gets too cold and Covid stops us from meeting inside. Disappointing! Viruses really knock me for a loop. Hope I don’t have to find out how I would do with Covid.

I think fibromyalgia played a big roll in my divorce many years ago. I wasn’t the person he signed up for

 

[Bamaman]

Rushmore: I can assure you that fibromyalgia is real. And there are many, many people suffering trying to lead their normal lives--pushing through the pain. Unfortunately, severe depression comes with any pain related ailment, and many folks don't understand depression. Sure, you're seeking drugs--as long as they minimize the pain. But I assure you everyone with fibromyalgia would rather deal with it "cold turkey" if possible. Your best bet is to find a good neurologist and try to get a plan of action. Otherwise, try to keep the rest of you as healthy as possible, and fight that depression with all your might.

 

[ivinsfan]

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.

I will say my friend speaks very highly of the pain management clinic she went to a few year ago. It was an inpatient clinic from Sunday night to Friday afternoon for two weeks. I do not know if it would everyone, I do know that it helped her tremendously. Got to get that dreaded insurance approval to attend.

 

[ivinsfan]

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.

It puts stress on everyone close to you IMO..I have long periods once in awhile when my GF goes totally AWOL. I never really know what to do. She is not her chronic condition and yet it changes her. She is fiercely private about this and a lot of times just doesn't want to talk about it. I feel that is her right because it is about the only thing she can control. I don't pester her, she knows I am here and I listen and then listen some more and when she wants space I give it to her.

Her daughter who I am very close to, tells me just go to the house and see her and get her to talk about what is bugging her and I reply,"It's not up to me to "make" her talk, she deserves to manage things in her own way. Those of you who suffer with conditions like this, what would you advise me to do.

 

[Rushmore]

Rushmore: I can assure you that fibromyalgia is real. And there are many, many people suffering trying to lead their normal lives--pushing through the pain. Unfortunately, severe depression comes with any pain related ailment, and many folks don't understand depression. Sure, you're seeking drugs--as long as they minimize the pain. But I assure you everyone with fibromyalgia would rather deal with it "cold turkey" if possible. Your best bet is to find a good neurologist and try to get a plan of action. Otherwise, try to keep the rest of you as healthy as possible, and fight that depression with all your might.

Good points. I actually don’t take anything for fibromyalgia at this point. In the almost 47 years I’ve had it I’ve tried many but really none ever worked long term. Now that I don’t work I just rest and hibernate when it’s at it’s worse. Helps to be able to have no pressure to “preform” Ice and sleep are my friends

 

[Dogman]

I would say just treat her like a friend, don't ask her anything, just go visit. She is probably very lonely. Do you Christian duty and look at it as service to help her through bad times.

 

[daylatedollarshort]

Recent studies show fibromyalgia is linked to specific microbiome changes:

"Some of the bacteria that were found in reduced levels in fibromyalgia patients include Faecalibacterium prausnitzii and Bacteroides uniformis, both of these bacteria are known for their involvement in the metabolism of butyrate. Butyrate is a short-chain fatty acid (SCFA) commonly produced by bacteria in our gut during the process of digestion, specifically when they assist our body in the break down of dietary fiber. Butyrate has received quite a bit of attention in scientific studies recently because it’s been shown to have positive effects such as anti-inflammatory properties, an ability to enhance the intestinal barrier and positively impact immunity. It seems, biologically, to make sense that reductions in this type of bacteria and therefore these metabolic pathways could be connected to fibromyalgia symptoms....There are several older studies that connect fibromyalgia to gut issues. For example, a 1998 study found that “Up to 50% of patients with a diagnosis of Fibromyalgia syndrome complain of symptoms characteristic of functional dyspepsia (indigestion) and 70% have symptoms of IBS.” Probiotics have been well studied for aiding both digestion and bowel irritability and may offer some relief from these issues."
https://www.verywellhealth.com/fibromyalgia-gut-microbiome-4774803

On a personal note, when I changed my diet, my fibromyalgia improved. I mean I went from constant pain to being able to go hiking and dancing. I also found a physical therapist who helped and discovered ways to smooth out my tight muscles, like posture improvement, better ergonomics at home, foam rollers and trigger point therapy. I was told to go to a pain clinic and just thought forget that. I don't want to spend time figuring out how learn to live with pain I want to spend my time finding the cause and eliminate it.

Gluten sensitivity has also found to be a factor -
This report shows that remarkable clinical improvement can be achieved with a gluten-free diet in patients with FM, even if CD has been ruled out, suggesting that non-celiac gluten sensitivity may be an underlying treatable cause of FM syndrome.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209093/

 

[MrsHaloFIRE]

I think fibromyalgia and chronic fatigue syndrome are widely overlooked and unappreciated in medicine as true afflictions. Some docs think they are as real as the tooth fairy. Thank you for coming to the group for a bit of support. I wish I could offer you more than prayer for you both to find peace

 

[Ncc1701]

Thank you for sharing and I hope the medical community finds an effective treatment for this disease.

It is posts like this that motivate me even more to retire as quickly as possible. Tomorrow is not guaranteed for anybody. To work hard all your life, finally retire at 65 and then get hit with a debilitating disease is my biggest fear....and motivator.

 

[Ebendana]

My son has Lupus and has gotten benefit from low dose naltraxone, it has been a lifesaver. He takes 4.5 milligrams daily, a compound pharmacy makes it.... may be worth a try

 

[Ebendana]

Hey Lucie, just curious... what has your patients experience been with low dose naltraxone? My son (lupus) and husband (spasticity post spinal cord neck bruising) are both getting benefit

 

[sn2792]

I belong to a massive Facebook group that does intermittent fasting. I don’t have any pain issues, but folks post all of the time how it helps with inflammation and other issues. Perhaps look at some of the research on this.

 

[Bamaman]

Because there is no test that definitively proves people have fibromyalgia, it's difficult to positively identify that's the problem.

And the medical world will often ignore a condition if they cannot turn research and medication into a profit.

Anyone that thinks they have it should be referred to a neurologist. And we've found that specialty to be especially difficult to get into as a new patient. Seldom does the problem go away, and often the best approach is taking some meds and learning how to live with fibromyalgia.

 

[JoelT1]

My mother experienced an episode of severe fibromyalgia, which was cured by a nutritionally oriented physician. The key was eliminating inflammation, through diet and nutrition. So, all hope is not lost.

 

[Imalifecoach]

Hey Dogman,
I am sorry you and your wife are dealing with this. I am sure you have become an expert on the topic of fibromyalgia and Know far more about it than I. Just recognize that you are a caregiver and as such, you are dealing with a lot of additional emotional, mental and physical stresses (no ****, right?!). As you work to help your wife, don’t put yourself on the back burner. Taking care of yourself truly is one of the best ways to help her. Find support, get help, take breaks, etc.
I wish you both the best....

 

[Dogman]

I just wanted to say thenk you to all of the responses. I am kind of a loner with just a few friends. The responses and support has been very helpful and i thank you for taking the time.
I keep looking forward. And I an going to look into several of the suggestions mentioned including taking better care of myself. It is easy to get lost in the details of taking care of someone fulll time. Again thanks!

 

[daylatedollarshort]

Fixing up my posture / muscle alignment also really helped me. I went to so many different kinds of medical providers who said they couldn't find anything wrong, then found a guy who said well this shoulder is lower and your range of movement is limited, your shoulders are rounded, your back muscles are stretched out and weak, etc.

If you have constant pain, beside the many good suggestions in this thread, check your posture. The book Back Care Basics has some good info on how to identify posture problems and yoga poses to correct them. There is no downside to having perfect posture, it doesn't cost anything except maybe some used books on posture correction and it might solve many issues. Look up forward head position, rounded shoulders and upper crossed syndromes for starters on the web and see if you might have those kinds of issues. I see many older people in our senior clubs with posture issues that are likely easily correctable.