Stiffness

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JayCS

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Sorry for repeating myself, but what helps me most for stiffness (& Ache) is the supp GABA (gamma-aminobutyric acid), plus now NADH.
Instead of muscle workouts, I'm now managing to increase all stretching instead, which helps feel fit (yoga & a stretching book). Used to have to keep to 20'' stints, but certain things I can now do for minutes. Some can do yin yoga (3' stints), that's too much/long for me tho.
 

Forgetmenot

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Stretching can help me ,sometimes that makes me hurt even more ,I do no sitting around make me more stiff
 

JayCS

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I do no sitting around make me more stiff
Used to be the same for me. Now better, but also I move around while sitting:
twist-stretching legs to left & right, foot on or under opposite knee...
Interesting that apparently more fibromites have stiffness only in the morning, rather than all day like us. Wonder why.
I call it "stiffness after poses" - whether lying, sitting or standing. Even after cycling, fast or slow, my legs & knees need time to unravel.
 

Forgetmenot

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I have no idea why we have it all day. I also get that nasty feeling like I have flu .not that it ever is ,just horrid
 

MNGal

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Stretching does help some, but too much stretching, sitting, walking, standing causes more pain in the end for me. I'm 57 and in the last 4 years I've been diagnosed first with PBC, then Sjogrens and Fybromyalgia. I'm taking Urso for the PBC (which has kept me from getting any liver damage to date), Hydroxychloriquin and Gabapentin for pain. I have read that Sjogrens can have symptoms of muscle/joint pain, I don't know that though for sure. I have chronic pain in my shoulders, upper arms, elbows, wrists, thumbs, hips, sometimes my lower back, sometimes my knees. I also experience stiffness with the pain and stiffness in my fingers. I use a pillow between my legs to keep my knees, hips and lower back from aching at night, but ultimately I have to change positions several times during the night. The times where the pain is amplified, I feel, is if I overdue things or I'm stressed out over something and oddly enough if I eat too much sugar or drink more than two or three cocktails. This is when I feel very tired as well. I'm thinking this may be what others refer to as "flares"? I would love to try some of the supplements that people say help them, but with PBC, I have to be very careful about what I take, same with OTC pain killers. I can take one Aleve tablet per day when I'm having a bad day, no Tylenol, Excedrine, Advil, anything with acetiminiphin (spell?).

So is this the way my life is going to be until the end? Will it get worse? Will it get better?
 

Forgetmenot

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Never ask yourself that question. you will only feel dread.You could simple stay at the level you are now .Don’t live tomorrow today ,or your live the stress twice.We do everyday as it comes ,Some good some crap but we get through them,
 

MNGal

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Never ask yourself that question. you will only feel dread.You could simple stay at the level you are now .Don’t live tomorrow today ,or your live the stress twice.We do everyday as it comes ,Some good some crap but we get through them,
Thank you Foregetmenot. "Don't live tomorrow today" is a very profound statement and I needed that reminder.
 

JayCS

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I also get that nasty feeling like I have flu .not that it ever is ,just horrid
Is that any different from "The Ache", or what is the difference?
Stretching does help some, but too much stretching, sitting, walking, standing causes more pain in the end for me. I'm 57 and in the last 4 years I've been diagnosed first with PBC, then Sjogrens and Fybromyalgia. I'm taking Urso for the PBC (which has kept me from getting any liver damage to date), Hydroxychloriquin and Gabapentin for pain. I have read that Sjogrens can have symptoms of muscle/joint pain, I don't know that though for sure. I have chronic pain in my shoulders, upper arms, elbows, wrists, thumbs, hips, sometimes my lower back, sometimes my knees. I also experience stiffness with the pain and stiffness in my fingers. I use a pillow between my legs to keep my knees, hips and lower back from aching at night, but ultimately I have to change positions several times during the night. The times where the pain is amplified, I feel, is if I overdue things or I'm stressed out over something and oddly enough if I eat too much sugar or drink more than two or three cocktails. This is when I feel very tired as well. I'm thinking this may be what others refer to as "flares"? I would love to try some of the supplements that people say help them, but with PBC, I have to be very careful about what I take, same with OTC pain killers. I can take one Aleve tablet per day when I'm having a bad day, no Tylenol, Excedrine, Advil, anything with acetiminiphin (spell?).

So is this the way my life is going to be until the end? Will it get worse? Will it get better?
Hi MNGal, and welcome!
Yep, too much of any activity or action, it all needs to be paced.
Yep, many Sjögren's symptoms are similar, so a certain, whoops: center for rare diseases suggested my FM may be Sjögren's, considering I also have pretty dry mouth; however nothing in the salivary glands.
The seeming joint pain in FM is however actually tendinitis/tendonitis, the tendon insertions above and below the joints. Joints'd be something else.
Changing positions several times a night is 'normal', I even have to get up and move, sometimes shower.
Amplified pain is a main feature of flares, = amplified symptoms, so is a relative term. E.g. I'm in a continual flare, but can have additional flares inside of that if I overdo it or under-/overdose supps. Of course sugar and alcohol are major triggers for flares, most will agree.
With PBC I'd think most supps'd agree much better than any pain killers, esp. mid to long term. How would you find out which supps are OK? I can't remember any of mine having a liver warning, at most very few.
Your life from now on will be a somewhat new one, but it can be a good one. It will get worse if you let it & other things, plus age. It can get better if you follow @sunkacola's advice post pinned at the top of the forum, can afford to pace well and spend time & energy on learning how to manage it by symptom tracking, trigger hunting to prevent, finding food & supps that alleviate, don't trigger.... ;-) Good luck 🍀
 
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MNGal

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Great information, thank you! As far as the supplements go, my liver specialist is not a fan due to the fact that they aren't regulated.

At first I thought I had tendonitis, because it didn't really feel like joint pain, like it does in my thumbs. So it makes sense that Sjogren's is the culprit.
 

JayCS

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As far as the supplements go, my liver specialist is not a fan due to the fact that they aren't regulated.
I understand. But that might be just general supp skepticism.
Making sure they come from reliable sources is all the more important, but possible.
 

sunkacola

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Stretching does help some, but too much stretching, sitting, walking, standing causes more pain in the end for me. I'm 57 and in the last 4 years I've been diagnosed first with PBC, then Sjogrens and Fybromyalgia. I'm taking Urso for the PBC (which has kept me from getting any liver damage to date), Hydroxychloriquin and Gabapentin for pain. I have read that Sjogrens can have symptoms of muscle/joint pain, I don't know that though for sure. I have chronic pain in my shoulders, upper arms, elbows, wrists, thumbs, hips, sometimes my lower back, sometimes my knees. I also experience stiffness with the pain and stiffness in my fingers. I use a pillow between my legs to keep my knees, hips and lower back from aching at night, but ultimately I have to change positions several times during the night. The times where the pain is amplified, I feel, is if I overdue things or I'm stressed out over something and oddly enough if I eat too much sugar or drink more than two or three cocktails. This is when I feel very tired as well. I'm thinking this may be what others refer to as "flares"? I would love to try some of the supplements that people say help them, but with PBC, I have to be very careful about what I take, same with OTC pain killers. I can take one Aleve tablet per day when I'm having a bad day, no Tylenol, Excedrine, Advil, anything with acetiminiphin (spell?).

So is this the way my life is going to be until the end? Will it get worse? Will it get better?
You cannot know the answer to that question, so as Forgetmenot so wisely says, don't ask it. There's no point and it will add stress to your life which will make things worse.

One very important thing you can do for yourself is stop drinking alcohol and eating sugar. Those things are actually poison to the human body and some bodies handle it well, but overdoing it is bad for everyone and for people with the conditions you have, specifically FM, sugar and alcohol will exacerbate symptoms greatly. Cut those things out of your diet and see how much better you will feel. Also, cut down on the amount of stress in your life from all sources. This doesn't just mean not to stress out about things. Stress in the body is also caused by a poor diet, insufficient sleep, lack of exercise, and...you guessed it....sugar and alcohol. These things deplete your resources physically so that you have fewer available to work on your health and well being.

Read the post at the top of the General forum, Advice for how to manage fibromyalgia, and see if you can start doing some of those things to feel better.

 

Forgetmenot

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Omg Sun give up suger ,🤣 doll I wish I could I’d lose weight and I know your 100% right .I give up smoking and drinking years ago ,can’t kick the suger
 

sunkacola

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Omg Sun give up suger ,🤣 doll I wish I could I’d lose weight and I know your 100% right .I give up smoking and drinking years ago ,can’t kick the suger
I cannot help but ask.......why do you feel you cannot give up sugar?

It's an addiction like smoking but if you can give that up, you can give up sugar!

I did it, 100%, for over a year. Ate nothing that had even the smallest amount of sugar in it. It was hard at first but got easier and ever since then I have not ever craved sugar, and many things are much too sweet for me if they have sugar in them.

Once you get used to eating fruit instead pf pastries, the pastries look ugly to you. Once you are used to lightly sweetening things with only honey or agave, that is all you will ever need.

It doesn't mean you will never get a treat again or eat anything sweet. Apart from using honey instead, once you have gotten past the initial year or so you can eat small amounts of dark chocolate (which is actually good for you in small amounts) and have the occasional other treat, as long as it doesn't send you back to craving sugary foods.

Forgetmenot.........I don't know you. But we have been on this forum for a while now together. I see you as being a very strong person, and often with wise things to say as well. I believe in you and if you want to do something you can do it.
 

JayCS

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dark chocolate (which is actually good for you in small amounts)
Yeah, that's now almost my only source of sugar. And soy yoghurt; I now mix sugarless & 10%-sugar sorts.
Do you or does anyone know what amount is "small"? And what % of cocoa qualifies for dark? I used to eat 100g of sugary (40-50%) chocolate in one go, now I try to stick to 20g (0.7 oz) of dark chocolate (70%, can't get used to the taste of higher than that; so that's about 25-30% sugar), to give myself a treat sometimes 3x that....
 

Forgetmenot

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Ty for the kind words.Mind you its easy to be wise to someone else lol ,and yes we been around a while lol.
Hmmm I guess I love my tea and I did go on sweeteners ,but suger is in so many things ,I’ve given up a lot in my life and I guess it see suger as the one thing it want;I don’t like dark chocolate one bit.I neve eat sweets.but I love milk chocolate.yes I could give it up but I guess it’s like smoking isn’t it ,You have to want it.I give up salt for over a year.I guess being a mum and having to elderly parents one with cancer I just don’t get the time or energy to look to closely at what I’m eating .
 
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