Newly Diagnosed

Hi,

My experience (having been diagnosed almost 20 yrs ago) is yes, there are definitely better days VS more severe days. The crashes of pain and exhaustion are very real.
For me, however, I didn't respond well to the 'typical' recommendations, and after years of getting worse, I have recently been diagnosed with ME/CFS which may be the reason I had such ups and downs and didn't respond well to what dr's recommended. I did not start on medication for the first 6 years, then the med's I had tried had side effects that were just as bad as the disease.

I have found some relief in gluten-free and a basic AIP diet. Definitely not a cure but any little help is a God Send.

Also, recently I started on LDN, on my 5th week and I am noticing a difference to the point where I am asking why NONE of my doctors over ALL the years ever spoke about this. I came upon it on this forum and after looking into it, was able to start it. It may not be a cure, my pain still fluctuates but I am noticing a significant amount more energy, less pain during the day and a bit of hope.

Yes you hit it right on the head. There is normal Fibro day for me. It’s like a level 2/3 achy where I can do the wash, sit, sweep, sit, order groceries online and sit outside and listen to podcast. Usually I’m good between 10-2 and that’s the end of my day. A glare can be expected after doing something physically out of the ordinary or FOR NO REASON AT ALL lol. Then there is a flare like I have today where it gets to 5/6 pain and I sit in bed with cats. I went to beach (3 hour drive) and spent two nights. So I expected this result.

@lisakaypowers

I have been undergoing MRI's, DaT scan, 4 days hooked up to an EEG monitor and electrodes literally glued to my head. I've had issues with memory, brain fog, cognition, and full body tremors while sleeping. My former therapist became concerned because I was telling her stories without realizing I had already told her. So when I saw my primary care doctor in November, she allowed my therapist to be in the appointment via phone. One of the things she said to my primary was "Can all of her doctors, you, the Cardiologist, both of her Orthopedists (I see one for my knees and one for my shoulder) and her breast specialist sit down and have either an in person conference or do one by zoom, so that all of you can try to figure out what's going on?" My primary care doctor said "We used to do "rounds" with patients for that reason. Now we don't have the time because of insurance companies won't let us take up that much time for a meeting." And that sent me down a rabbit hole of tests trying to find a Neurological Answer.

The whole process is frustrating and exhausting in so many ways. Financially, emotionally, etc.

Keep finding hope in the little moments of clarity, keep advocating for yourself (hardest thing to do after years of hitting walls) and if possible learn as much as you can.

Why insurance gets to dictate to drs how to treat patients is awful.

One thing that is interesting, I had an EMG due to continued pain and L shoulder, neck and rotator cuff not healing properly after 5 years and it showed Myotonic discharges which indicates and I know now after genetic testing that I have a muscle disorder that often mimics Fibromyalgia. The Dr wasn't 100% sure how it effects my myriad of problems but he did say that as Neuromuscular Dr he would like to see every Fibromyalgia patient have genetic testing because it explains why typical protocols for treating Fibromyalgia doesn't work for those with this genetic condition.

Truly hope you get or find something that works.

@lisakaypowers

The way insurance companies dictate treatment is disgusting. My breast specialist had to fight Aetna last year to get them to agree to cover an MRI. She fought for over a month, before finally getting them to say yes. Now it's getting worse because AI is making the decisions without a medical person even looking at things. I had an EMG done at Mayo Jacksonville, as part of seeing if I had carpal tunnel. I cried the entire time, cause it hurt so much. I told the techs doing the test "Look you guys are the best hospital on the planet. You can't tell me your researchers can't come up with anything better than this barbaric test."

I started Lyrica this past Wednesday so it's too early to know if it helps. I also have to go to my primary care doctor every month for a high dose injection of B12. And im on once a week of vitamin D

@lisakaypowers Can I ask what genetic muscle disorder this is? Does it have a name? I was diagnosed with fibro 40+ years ago. Thanks!

@jakefix82
Myotonic Congenita: There are two types.

Thomsen disease: A milder, autosomal dominant form that presents early in childhood.
Becker disease: An autosomal recessive form that usually appears later.

I would say even if a person doesn't have major issues due to this, it can effect your bodies response to anesthesia so if you would need surgery, it is good to let the dr's know if you have this.

They said Dystrophic Myotonia 2 is also one that appears later and has very similar symptoms of Fibromyalgia.

The variant that came back for me was on the CLCN1 gene. While the variant that showed up on mine was not known as well, Variant of Uncertain Significance, the doctor and report stated that any variant on this gene can produce disease or symptoms. How significant of an impact remains to be seen for me but for others if they have the more common one, it could be very significant.

Reading about these different diseases or genetic issues doesn't seem as problematic or altering, however for those of us who suffer with Fibro or ME/CFS, manifestations of genetics is so varied in everyone that it definitely could be significant. For some they may never have symptoms or problems, for others might be worse. This may be something that just adds difficulty to treatment, but for me it did explain why I had scoliosis and other odd symptoms throughout my life.

Sorry for the ramble - It has all been new info for me, but definitely something I have NOT ever read on any of the website, forums, books or anything else regarding Fibromyalgia until I had this injury and then sent to a neuromuscular specialist.

@lisakaypowers Thank-you so much for the info! Now that I’m 77, I’m dealing with a different set of issues that don’t seem to align with the fibro issues I’ve had in the past.

In recent years, I’ve had 2 UTIs, the diagnosis for each was preceded by the onset of severe muscle clenching. First time, my left hip wouldn’t function - muscles were wound so tight that the joint froze and the muscles were inflamed. Once the UTI was diagnosed, antibiotics cleared it up quickly, but it took more than 3 months for the muscles to resolve.

Then a few months ago, I developed clenching of muscles in my left flank. Within a couple weeks, signs of a UTI were apparent and the infection cleared up within a week with antibiotics. After 3 1/2 months, the left flank muscles have resolved in the last week. . Until now, any movement aggravated and inflamed those tight flank muscles.

It seems my muscles over-react to any sign of infection in my body a few weeks before it’s apparent that there’s an infection somewhere. I’m now on hormone cream to hopefully prevent another UTI - but months of rest so the muscle tension resolves at my age means my muscles weaken. I can no longer take anti inflammatory drugs, as they cause internal bleeding. I just started back with mild exercising a few days ago - so far, so good. But my legs are shaky. I use a cane and I also have idiopathic peripheral neuropathy. I’m thinking I need to see a neurologist to sort this out. Just had a full neurological workup five years ago and that’s when the neuropathy was diagnosed.

Thanks again!

I believe there is. There are days when I could hardly stand to be touched. I would feel like I was burning up inside almost like a hot flash, but it just didn’t go away. Sometimes the pain was so intense. I just wanted to lay down and die given enough time and energy you can make it through and eventually you’ll feel almost human. It’s very weird how this comes on where it comes from how it came about or how to get rid of it. Our bodies are all individual as seem to have a mind of their own.

@leoandbear the pain of fibromyalgia is just horrible when I was working and I got hit with it. I had to leave my job. I really hated it and what it was doing to my life unfortunately you can’t see what it’s doing to you so it’s hard for people to understand that it’s there. I of course know it was there and it hurt bad given enough time, rest hot bath is at night before I went to bed and getting a decent night sleep did make a difference. I eventually found a job I could do or I didn’t have somebody hounding me all the time and that seemed to make a big difference as well. I think if you’re in a job or you don’t have any stress or
Mild stress it’s much easier to cope and get along with whatever job you have. I’m really old now and I’m tired. I’m 81 years old and I still have pain and issues with the fibromyalgia but nothing like I did when I was younger. It hit me when I was about 40 to 43 years old. I think I suffered at least 10 years maybe a little longer it gives you a great appreciation for what it’s like to feel. “good“. I do hope that you get to feeling better. Try to be good to you. Take a massage. Take a long walk get lots of rest. Try to take good care of yourself take hot baths and relax and eventually you’ll get through the day and say there I did that and now I’m gonna be OK for another day.