Seeking Any Guidance - 46 y/o Male

[BombayMum]

Hi Fibromike,

do continue your search for a doctor, but I'll just share alternative methods which worked for me for overall better health.
- took sertaline for 3-4 years, then stopped it during covid lockdowns. Instead my new routine is yoga, excercise of some kind and a healthy diet. My fibro Rhemo had also advised PCM for pain and excercise of atleast 40 minutes 3-4 times a week. Believe me, it works. And would help you sleep better too.

 

[JayCS]

PCM for pain

What would that be, BombayMum? I can't find a fitting meaning.

 

[BombayMum]

oh! sorry, thats Paracetamol, commonly used in India. It's like Tylenol in USA.

 

[Looby69]

I had two ENTs tell me that I had ALS as a direct result of the swallow test. The nuero at Columbia told me absolutely not - all he was seeing was a mono neuropathy of my perineal nerve.

I believe the slight swallow issue I have is from TMD - It can flare up, really cause a lot of pain etc.

Scary though, right? Were you formally dx with Fibro?

Hi Fibromike,

do continue your search for a doctor, but I'll just share alternative methods which worked for me for overall better health.
- took sertaline for 3-4 years, then stopped it during covid lockdowns. Instead my new routine is yoga, excercise of some kind and a healthy diet. My fibro Rhemo had also advised PCM for pain and excercise of atleast 40 minutes 3-4 times a week. Believe me, it works. And would help you sleep better too.

What was it like coming of Sertraline @BombayMum

 

[cookiebaker]

What was it like coming of Sertraline

I am not BombayMum, but I am coming off of Sertraline right now... and to be honest.. not great, but not that horrible either.

First thing to know is you do not just stop taking it cold turkey... even tho my long term dose was only 100mg, i was advised to wean down to 50mg for at least a week, and then down to 25mg for at least a week... Would definitely speak with your prescribing doctor on how best to wean down for your dosage - and dont rush it.

My last dose was taken Friday, Aug 26... my withdrawal symptoms started in earnest on Tues, Aug 30, and are primarily a woozy/dizzy feeling... some digestive upset, but how much is withdrawal, and how much is the typical stuff i deal with anyway?? really hard to say on that one. Mild headache.. some pins & needles feelings, but again.. how much is withdrawals, and how much is my "norm"?

I have to wonder if I had gone an extra week on the weaning down, if things would be any different/better?
Hoping the dizziness resolves pretty soon.. i dont like it much.

 

[BombayMum]

As @cookiebaker relates above, getting out of sertaline needs to be gradual. It primarily depends on these factors as I see it:
1) dosage, in my case 50mg, though I've also had been suggested 100mg.
2) years of medication
3) Body response to SSRIs

After taking regularly for 2-3 years, I started phasing it out for the last one year, taking medication on alternative
days. Then end of 2020, I stopped it altogether.

physical: upset tummy, pins and needles, some sort of wooshing in the head, funny sounds like buzzing in the head, some kind of temporary numbness on the face (I might have got ailments unrelated to the weaning and there was the covid vaccine later on). These lasted intermittently a few months. I've gradually started loosing the extra weight I put on while on serta, reduced it by 5 kg, another 4-5 kg to go.

Psycho emotional: crying spells, anger, impatience, mild depression, all came back and sometimes persist. So the Yoga/ Gym/ Swimming/walk helps.

I've a doctor spouse, so most of the subsequent decisions regarding dosage reduction have been taken with his or his colleagues consultation. Most people here in India still regard Fibromyalgia as a fake disease. I was lucky to find one who diagnosed it.

 

[FibroMike]

The things that have me most concerned that there’s still something nefarious happening (regardless of a formal dx):

- 24/7 muscle pain everyday ( I’d assume this is also from lack of slee)
- the facial pain, front of throat and neck pain along with jaw and ear pain
- complete inability to sleep

Assumption here is this is indeed common

 

[cookiebaker]

the 24/7 muscle pain - most definitely common - some is from lack of sleep, some is not and intensity can vary from one day to the next.

the facial pain, throat & neck... I cant really answer to that one..
I do have neck pain, but I also have physical issues that contribute to that pain in the form of osteoarthritis and general wear& tear problems with disks..
I have headaches that like to center around/behind the eyes (some from the neck, some from light sensitivity & eye strain)

Insomnia is also a pretty common complaint. I tend to go in spurts.. sometimes i can sleep ok (not great, not very restful, but still sleep) and other times i dont sleep much at all.
i will say that while i was taking sertraline i did sleep slightly better, but i am trying to come off of it due to unwelcome side effects.

 

[JayCS]

The things that have me most concerned that there’s still something nefarious happening (regardless of a formal dx):

- 24/7 muscle pain everyday ( I’d assume this is also from lack of slee)
- the facial pain, front of throat and neck pain along with jaw and ear pain
- complete inability to sleep

Assumption here is this is indeed common

IMO whether these are nefarious or common hinders rather than helps, by worrying or pacifying...
As said I think these as your 3 main issues and need testing as suggested in my post above.

 

[BombayMum]

The things that have me most concerned that there’s still something nefarious happening (regardless of a formal dx):

- 24/7 muscle pain everyday ( I’d assume this is also from lack of slee)
- the facial pain, front of throat and neck pain along with jaw and ear pain
- complete inability to sleep

Assumption here is this is indeed common

for the sleep issue:
1) Are you exercising?
2) do you take caffeine products, processed foods or sugars in your diet?
3) Are you overworked, stressed?
if yes to any one, then you need a lifestyle change pronto.

for the throat issue:
can share some yoga exercise here if you would like to try

 

[BombayMum]

I have headaches that like to center around/behind the eyes (some from the neck, some from light sensitivity & eye strain)

Hi @cookiebaker this sounds like migrane.

 

[cookiebaker]

Hi @cookiebaker this sounds like migrane.

i suppose that is possible.. guess i never really thought of them that way..
I have always thought of a migraine as utterly debilitating - as in lock me away in a dark room, no noise, no light, just quiet, and my headaches are no where near that bad. bothersome, yes, but they rarely interfere with my ability to do things...

 

[JayCS]

I have headaches that like to center around/behind the eyes (some from the neck, some from light sensitivity & eye strain)

Hi @cookiebaker this sounds like migrane.

my headaches are no where near that ba

Just a comparing thought, not suggestion: I get headaches similar to this from my frontal sinuses caused by a histamine-y reaction (from food and/or stress), which I can tone down using GABA via serotonin. More often I get these in the side (paranasal) sinuses.

 

[Forgetmenot]

There are many drugs used to help with fibro
Your Dr should know what drugs will help.id say the biggest thing you can do is a lifestyle change.
Fibro is a long term life long battle against yourself.
Many ppl find themselves going though some emotional crap once they know what's wrong.
Relief they know what's wrong.anger they can't do what they wanted to.And grief of a live that's changed.work with your Dr.and do stay in touch here .as we can give some much needed emotional support.

 

[sunkacola]

i suppose that is possible.. guess i never really thought of them that way..
I have always thought of a migraine as utterly debilitating - as in lock me away in a dark room, no noise, no light, just quiet, and my headaches are no where near that bad. bothersome, yes, but they rarely interfere with my ability to do things...

There are many kinds of migraine. There are even ophthalmological migraines that affect the eyes but do not cause any pain at all. Some people experience migraines that are debilitating and some do not.

It is also commonly thought that if you get migraines, then that will continue, and you can't just have one or three of them in your life. But I have had two migraines in my life, which were of the dark-room-leave-me-alone-lie-perfectly-still type, and only those two. I don't suppose that is common, but have never bothered to find out.

Medical knowledge is still in it's infancy, after all. Only a hundred years ago or so people were still buying "snake oil" cures from carnival hucksters.