Im not convinced, are you?

james95

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Joined
Sep 9, 2022
Messages
6
Hello, I've recently posted in the moan, complain & vent thread about my frustration with my diagnosis (see post for details). I thought I'd post my symptoms in here to see what you all thought, do you think it's fibro?

Main symptoms:
Dry eyes (non-obvious meibomian gland dysfunction)

Lower back and hip pain - this is the most common/consistent after eye symptoms and is present every day when I wake. I have had an mri and it showed no signs of spondylitis in the joints however.

Foot pain including toes - diagnosis of this was slightly flat flooted and partial plantar faciatis. No notable swelling

Hand/finger pain including cramping - mainly in the joints of my fingers. I feel like I have noticed slight swelling before but never consistent

Fatigue - constantly tired, feeling like I want to go to sleep constantly even after being in bed 9 hours

Nocturia (needing to urinate at night) - I feel like this is a big disruptor to my sleep on top of my pain


Lesser symptoms:
Dry & itchy scalp - this comes and goes, could be unrelated.

Chest pain - pain around my heart area, drs said this is just cartilage. Comes and goes frequently

Knee pain - a constant burning feeling in the knees present most days

Migraine with aura - had these for my full life

IBS - worse with most medications mainly painkillers

Medications:
Toprimate - Migraine
Co-codamol - migraine/pain
Hydrocortisone eye steroids - Dry eyes

My symptoms are improved slightly by more sleep, light excercise and generally not expending my self as much. My symptoms are at there worst in the morning and last thing at night.
 

sunkacola

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Hello @james95 , and welcome to the forum.

Certainly, from what you say, you may have fibromyalgia. Of course, we cannot diagnose, but since your doctors have tested for other things that will cause the symptoms you have and come up with nothing else to explain it, that is the diagnosis you will get.

Yes, it is frustrating to get a diagnosis and then find out there's really no treatment that will make it better. And because all of us who have FM have different reactions to treatments, there is no one thing that helps everybody.

What does help everyone, though, is to be as healthy as possible other than the fibro by eating a very healthy diet (whatever is most healthy for you, that is), getting the right kind of exercise that suits your body, and maintaining the best possible mental state and attitude towards the syndrome. Sounds like a lot, but once you ease your way slowly into it, all those things become second nature.

I always advise people to do as much as they possibly can in the healthy body and mind department and do as little as possible when it comes to drugs. Steroiods are terrible for long-term use, because your body will become addicted to them and you really don't want that, believe me. I would advise that you use something OTC for the dry eyes instead of steroids or you may be creating a much worse problem.

I would also caution you about taking a medication that contains codeine for the long term because that is another addictive drug.

Now, to be clear.....these are my thoughts and my advice -- I am not telling you what to do and you alone can make the decisions about what is best for you. But I do encourage you to put out the effort to try all of the other non-drug things that might help in order to see if you can do without the drugs or reduce the use of them. I wrote this post because of the journey I made from using a lot of drugs to using almost none, and others have said they have done the same.

You are welcome here to vent, ask questions, seek support, and anything else you need that we can do.
Please read the following and let me know if you have questions.

 

cookiebaker

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662
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DX FIBRO
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Hi and Welcome, James.

for the light sensitivity, i am going to suggest getting a pair of "yellow tint sunglasses" - commonly used by target shooters to cut glare.
wear those whenever you are using the computer, it should help at least a little.

many of us with fibro also have other overlapping comorbidities... so it is not unusual to get confused about what symptoms are caused by what.
for me, it is osteoarthritis/spondylosis - all over, and IBS along with the fibro.

Have you ever been to see a chiropractor? a GOOD one might be able to help with the low back & hip pain... (something i also deal with) Hyper-mobility of the SI joints (where the pelvis meets the spine) is a thing, and often includes pain in the hips, sometimes radiating down the buttocks and legs..
Bursitis in the hip may also be a factor, but that should have shown up on your MRI if it was there.
If the pain in your low back is mainly slightly off center (about an inch or so to one side or the other), it is probably SI joint pain... centered pain would be related to the spine. I have both.

Arthritis in the hands - even osteoarthritis - can cause some mild swelling. Have you been tested for Rheumatoid or Psoriatic arthritis? Or any other rheumatic disease? (Lupus, MS, etc) If not, it is worth getting checked out for these things.

I would also request blood-work to check vitamin and mineral levels. standard blood-work only checks a couple of things.. ask for a full vitamin/mineral workup. I had to specifically ask for this from my primary doc.. I even specified a few to include.
I also asked for a hormone workup - did not get quite what i asked for tho... 😒

I used to have to get up during the night to go to the bathroom, but have not had to recently.. I am putting that off to getting off sertraline..
there were times that i was getting up 2 or 3 times a night! but at least once, yeah.. So, take away here is that some medications can make you need to go more often. You can try limiting your fluid intake after 7-8pm, but if it is medication related, it may not help.
For me, the pain in my hips was/is more disrupting than needing to get up for a bathroom break, but I can definitely relate.

last time i had my eyes checked the optometrist said I also have dry eyes, but suggested an OTC natural tears drop rather than steroid drops.
I also have dry itchy skin.. not just scalp, altho that, too.. but i get the itches pretty much anywhere. it will usually manifest in one location at a time... like around the knee, or ankle, wrist, back of my hand.... If i am not careful, not paying attention, i can scratch so much i bruise, adding to the pain load. 😞

Hang in there, know you are not alone and you can get thru this, one day at a time.
 

JayCS

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Hi James, I agree with all of the above, sunkacola's basics and caveats, cookiebaker's ideas for preventing and alleviating symptom and triggers.
Regarding diagnosis I prefer to go with the ACR 2016 criteria for fibromyalgia. The symptoms you describe fit to these, as your pain is widespread enough and enough additional symptoms severe enough. But also what they introduced is saying that it may be something else as well. Don't know if that perspective is a comfort or not.

And if there is anything else, then my go to is the autoimmune Sjögren's Syndrome, because your very dry eyes are a strong indicator, your other symptoms also fit, and you not mentioning being checked for it although it's so possible.
The problem with that diagnosis, as a head rheum once told me: Doesn't make any difference, you still have to get to grips with each single symptom alone.

I can't see any of your symptoms that directly remind me of MCAS, like sweetkamie suggested on the venting thread (and I have). But I think it's worth everyone here that isn't sure and even those who are sure they have fibromyalgia to know about MCAS, since its major proponents see fibromyalgia as a possible part of MCAS (whilst fibromyalgia researchers and rheums aren't familiar with it at all, it's more for allergists). Knowing that offers more help, not just certain antihistamines, esp. for emergencies, but also trying diets low in histamine (and praps salicylate, oxalate, similar to any elimination diets for IBS), try increasing serotonin, and trying MCAS supps might help anyone, as they are generally anti-inflammatory and antioxidant, good for fatigue and some even for pain too.

I won't add to cookiebaker's great treatment ideas until you ask, except to mention that there are 100s, even if money is short.
 

james95

New member
Joined
Sep 9, 2022
Messages
6
Hi and Welcome, James.

for the light sensitivity, i am going to suggest getting a pair of "yellow tint sunglasses" - commonly used by target shooters to cut glare.
wear those whenever you are using the computer, it should help at least a little.

many of us with fibro also have other overlapping comorbidities... so it is not unusual to get confused about what symptoms are caused by what.
for me, it is osteoarthritis/spondylosis - all over, and IBS along with the fibro.

Have you ever been to see a chiropractor? a GOOD one might be able to help with the low back & hip pain... (something i also deal with) Hyper-mobility of the SI joints (where the pelvis meets the spine) is a thing, and often includes pain in the hips, sometimes radiating down the buttocks and legs..
Bursitis in the hip may also be a factor, but that should have shown up on your MRI if it was there.
If the pain in your low back is mainly slightly off center (about an inch or so to one side or the other), it is probably SI joint pain... centered pain would be related to the spine. I have both.

Arthritis in the hands - even osteoarthritis - can cause some mild swelling. Have you been tested for Rheumatoid or Psoriatic arthritis? Or any other rheumatic disease? (Lupus, MS, etc) If not, it is worth getting checked out for these things.

I would also request blood-work to check vitamin and mineral levels. standard blood-work only checks a couple of things.. ask for a full vitamin/mineral workup. I had to specifically ask for this from my primary doc.. I even specified a few to include.
I also asked for a hormone workup - did not get quite what i asked for tho... 😒

I used to have to get up during the night to go to the bathroom, but have not had to recently.. I am putting that off to getting off sertraline..
there were times that i was getting up 2 or 3 times a night! but at least once, yeah.. So, take away here is that some medications can make you need to go more often. You can try limiting your fluid intake after 7-8pm, but if it is medication related, it may not help.
For me, the pain in my hips was/is more disrupting than needing to get up for a bathroom break, but I can definitely relate.

last time i had my eyes checked the optometrist said I also have dry eyes, but suggested an OTC natural tears drop rather than steroid drops.
I also have dry itchy skin.. not just scalp, altho that, too.. but i get the itches pretty much anywhere. it will usually manifest in one location at a time... like around the knee, or ankle, wrist, back of my hand.... If i am not careful, not paying attention, i can scratch so much i bruise, adding to the pain load. 😞

Hang in there, know you are not alone and you can get thru this, one day at a time.
Hello,
Thank you for taking the time to reply to my post. I do use yellow light filters on most electronics and had yellow tinted glasses in the passed but not noticed a major difference. Its maybe something I could try consistently. The biggest thing that positively impacts my eye symptoms is an electrically powered warm compress for about 20 mins per day. I would like to get to the position where I can read though (without pain), this still seems lightyears away. I can't seem to get off the steroid drops as without them I have a permanent headache, it was the same prior to me starting them. I've also had hyper mobility mentioned to me in the past but never investigated, had many blood tests done but not too sure what these where now.

I find that that I'm effected quiet badly by a lack of sleep or poor quality sleep so the waking up for the toilet has always bothered me. I have tried drinking less of a night but always need to get up at least once then I'm awake for a little while after. Thank you for all of your advise this means alot.
 

james95

New member
Joined
Sep 9, 2022
Messages
6
Hi James, I agree with all of the above, sunkacola's basics and caveats, cookiebaker's ideas for preventing and alleviating symptom and triggers.
Regarding diagnosis I prefer to go with the ACR 2016 criteria for fibromyalgia. The symptoms you describe fit to these, as your pain is widespread enough and enough additional symptoms severe enough. But also what they introduced is saying that it may be something else as well. Don't know if that perspective is a comfort or not.

And if there is anything else, then my go to is the autoimmune Sjögren's Syndrome, because your very dry eyes are a strong indicator, your other symptoms also fit, and you not mentioning being checked for it although it's so possible.
The problem with that diagnosis, as a head rheum once told me: Doesn't make any difference, you still have to get to grips with each single symptom alone.

I can't see any of your symptoms that directly remind me of MCAS, like sweetkamie suggested on the venting thread (and I have). But I think it's worth everyone here that isn't sure and even those who are sure they have fibromyalgia to know about MCAS, since its major proponents see fibromyalgia as a possible part of MCAS (whilst fibromyalgia researchers and rheums aren't familiar with it at all, it's more for allergists). Knowing that offers more help, not just certain antihistamines, esp. for emergencies, but also trying diets low in histamine (and praps salicylate, oxalate, similar to any elimination diets for IBS), try increasing serotonin, and trying MCAS supps might help anyone, as they are generally anti-inflammatory and antioxidant, good for fatigue and some even for pain too.

I won't add to cookiebaker's great treatment ideas until you ask, except to mention that there are 100s, even if money is short.
Thank you so much for your reply,
I have thought of sjogrens before and even mentioned this to a Rhumatologist, this was dismissed due to the fact I have no dryness in my mouth. The eye symptoms are the ones I would like resolved above all else, or at least lessened. I'm not familiar with MCAS, I'll do some googling. Thank you
 

james95

New member
Joined
Sep 9, 2022
Messages
6
Hello @james95 , and welcome to the forum.

Certainly, from what you say, you may have fibromyalgia. Of course, we cannot diagnose, but since your doctors have tested for other things that will cause the symptoms you have and come up with nothing else to explain it, that is the diagnosis you will get.

Yes, it is frustrating to get a diagnosis and then find out there's really no treatment that will make it better. And because all of us who have FM have different reactions to treatments, there is no one thing that helps everybody.

What does help everyone, though, is to be as healthy as possible other than the fibro by eating a very healthy diet (whatever is most healthy for you, that is), getting the right kind of exercise that suits your body, and maintaining the best possible mental state and attitude towards the syndrome. Sounds like a lot, but once you ease your way slowly into it, all those things become second nature.

I always advise people to do as much as they possibly can in the healthy body and mind department and do as little as possible when it comes to drugs. Steroiods are terrible for long-term use, because your body will become addicted to them and you really don't want that, believe me. I would advise that you use something OTC for the dry eyes instead of steroids or you may be creating a much worse problem.

I would also caution you about taking a medication that contains codeine for the long term because that is another addictive drug.

Now, to be clear.....these are my thoughts and my advice -- I am not telling you what to do and you alone can make the decisions about what is best for you. But I do encourage you to put out the effort to try all of the other non-drug things that might help in order to see if you can do without the drugs or reduce the use of them. I wrote this post because of the journey I made from using a lot of drugs to using almost none, and others have said they have done the same.

You are welcome here to vent, ask questions, seek support, and anything else you need that we can do.
Please read the following and let me know if you have questions.

Thank you Sunkacola. I agree with all you have to say on having and maintaining a healthy body and mind. Especially when it comes to the use of heavier drugs. Unfortunately I sometimes find myself on a downward spiral when one thing goes wrong my daily routine goes out the window, my pain and fatigue rises and I lean heavily on opiet type medication. Or the pain & fatigue just get too much and I just don't want to do anything but eat fast food and numb myself with pain killers which then compounds my pain. There's probably some addiction aspect in there when It comes to opiets but I'm currently doing quiet well at staying off them.
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
662
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
had yellow tinted glasses in the past but not noticed a major difference.
ok. so the yellow doesn't work for you.. have you tried any other colors (in glasses)? green, brown, etc? heck, even the standard grey might help some.
Another option for screen time is changing the colors - I have found that darker backgrounds work better for me (have suggested an option for that on these forums, you can see that discussion here )
Depending on what you use for a browser, there may be add-ons that will let you manipulate the colors yourself. (@JayCS - i still need to look into the one you suggested to me, lol)

biggest thing that positively impacts my eye symptoms is an electrically powered warm compress for about 20 mins per day
Is there some reason you only use it once a day? why not 2-3 times a day, spaced out thru the day?

I have tried drinking less of a night but always need to get up at least once then I'm awake for a little while after.
has this been a lifelong issue, or just more recent? Either way, you may want to talk to your doc about it.. there could be a medical reason for it.
Unfortunately I sometimes find myself on a downward spiral when one thing goes wrong my daily routine goes out the window, my pain and fatigue rises and I lean heavily on opioid type medication.
This is something you can learn to control to some degree.. You may not be able to stop something from going wrong, but how you react to it is well within your power. It does take time and diligent practice, but you can put the brakes on letting things go out the window and getting worse from there.

Over the last 9-10 mos, I have found it very helpful to work with a counselor to try to help me change my outlook on things. I got quite lucky and found a great one within the clinic i go to right in the Internal Medicine dept (where my primary care doc is). She helped me see that yes, ok, I have these issues, and there is not a lot that can be done medically for them, but there are things that I can do to work with and around them. I suppose it was similar to CBT (cognitive behavioral therapy) and included mindfulness and forgiving myself for not being able to do everything i want to do in one go.
Just some food for thought.
 

JayCS

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Rheumatologist, this was dismissed due to the fact I have no dryness in my mouth.
If you watch the following video about Sjögren's you'll see/hear him say at around minute 24' that dryness of eyes or mouth are NOT necessary, say people deeply in the know. The slide says "Sicca Symptoms may be minimal or nil!!!! - his exclamation marks. "Sjogren's Syndrome: Beyond Dry Eyes and Mouth by Frederick Vivino, MD".

Thing is that opens many more of us to the speculation of praps having it. I actually do have a fairly dry mouth and somewhat dry eyes, which is why I was pointed there. And listened to that again and again. But realized what the rheum'd said was right: The meds they recommend trying would be nothing for me anyway. But the lip biopsy proved it wrong anyway....
 

JayCS

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there may be add-ons that will let you manipulate the colors yourself. (@JayCS - i still need to look into the one you suggested to me, lol)
Hehe, and I'm now "stuck with it" on my firefox! ;-D
 

JayCS

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You may not be able to stop something from going wrong, but how you react to it is well within your power.
I have so much will power, but oh boy/girl does it happen to me. But I forgive myself, considering all I'm concentrating on. The only way for more self-discipline would be not to write here any more, but that'd be a major inspiration for me gone... :rolleyes: 👐 :D
 

cookiebaker

Very helpful member
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662
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Hehe, and I'm now "stuck with it" on my firefox! ;-D
:ROFLMAO: go into firefox settings > add-ons, and disable it, or uninstall it ;)
I have so much will power, but oh boy/girl does it happen to me. But I forgive myself, considering all I'm concentrating on. The only way for more self-discipline would be not to write here any more, but that'd be a major inspiration for me gone... :rolleyes: 👐 :D
Please dont stop writing here!! You have given so much help and inspiration to others that you would be sorely missed for sure!
 

JayCS

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:ROFLMAO: go into firefox settings > add-ons, and disable it, or uninstall it ;)
Really? Who'd'you get that off of? :ROFLMAO: It's actually funny that it turns everything that was black dark grey now. Praps I'll change that to deep blue next... inspired by here....
Please dont stop writing here!!
Hmm... spose I'm stuck with a certain amount of lack of self-discipline too.. :D.
Or you'd have to ask me whether I've done what I planned to do every time I show up...

OK, reporting back: I again procrastinated with eating this evening from 7 to 8:30 and with going to bed from 22:00 to 23:10. :rolleyes:. At the moment I'm dangerously prolonging my first sleep break.
But worth it if the publicly admitting it here makes me more disciplined in the mid term...
So... Next hurdle: Eating tomorrow morning directly after getting up instead of an hour later.
(Yeah, everything's - at least - an hour later than I actually want to). Off now... 🛌
 
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