How do you get exercise in if you have fibromyalgia on top of your PsA? I do notice that when I eat better I do fee a little better; however, I can't seem to exercise because it flares up my fibromyalgia. I feel stuck between two rocks.
Sometimes it take professional help to get started Charley but everyone CAN. Here's a pretty good article. http://www.webmd.com/fibromyalgia/fibromyalgia-pain-10/fibromyalgia...
It can be overwheliming that why a good trainer, PT or OT is so helpful..............
You will find as you search for info regarding exercise and fibro, that most Docs agree there is no more IMPORTANT component than exercise in treatment. What doesn't move rusts. As pain management moves out of the few GP and Rheumy offices that it remains in don't surprised if your pain management specialists don't have verifiable exercise component to your "contract"
I take a chronic pain exercise class at the university (its personalized but supervised) we had three new members last week. All three were participating as requirement of getting their narco scripts renewed.
I was talking with a person into holistic health and he told me for autoimmune try gluten free diet. I have been on for two months don't notice much difference. I am going to my rhemy in sept. will see how my test are. I was also told to try not eating and drinking dairy. I am now drinking almond breeze. You could try changes like these see how you feel.
I am still taking my meds humira and mtx
Thank you, I have tried a PT and they said there is not much they can do for me because what helps fibro flares up PsA. I don't know if they are just not very familiar with both or if it is true. I live in Montana and there isn't much info for me out here. I also find that the storms cause a lot of problems. This summer has been a real bad one, it seems every night we have something coming in and the pain hits me in the evening. I am no longer on remicade and I can no longer take steroids. I am only on gabapentin and pain pills. My husband changed jobs about 6 months ago and now we can't afford his new insurance. I have tried to work but I have been getting so bad that I now find myself forgetting things and feel as if I am in a fog all the time. I need to figure out how I can get on disability so I can get some kind of medical.
tntlamb said:
Sometimes it take professional help to get started Charley but everyone CAN. Here's a pretty good article. http://www.webmd.com/fibromyalgia/fibromyalgia-pain-10/fibromyalgia...
It can be overwheliming that why a good trainer, PT or OT is so helpful..............
You will find as you search for info regarding exercise and fibro, that most Docs agree there is no more IMPORTANT component than exercise in treatment. What doesn't move rusts. As pain management moves out of the few GP and Rheumy offices that it remains in don't surprised if your pain management specialists don't have verifiable exercise component to your "contract"
I take a chronic pain exercise class at the university (its personalized but supervised) we had three new members last week. All three were participating as requirement of getting their narco scripts renewed.
Where in Montana are you at???? There are some great resources IF you are in the right spot. Plentywood, or Two Dot not so much..................
I have been trying to add foods that are listed as Anti-inflammatory and take out foods that cause inflammation.
shepherd mt, close to billings but the my rheumatoid dr. was just wanting to pump me with more remicade and steroids even after I developed a heart issue. My family dr. is the one who told me I could not have any more and he put me on gabapentin. The gabapentin helps with some of the pain cause I can tell if I forget to take it.
where can a person find this kind of information ?
SublimeAmiga said:
I have been trying to add foods that are listed as Anti-inflammatory and take out foods that cause inflammation.
Okay Charley. Call 406.247.3200 (which is Riverstone Healthcare) and ask for Dr. Buzz Walton (or his senior "gatekeeper" and explain your exercise Problem. He is the sports medicine Fellow this year (He may soon be going off staff as i am not sure what their academic year is but will be replaced by another.) He is supervising/teaching residents to take care of folks like you/us. In primary care "Sports Medicine" is pretty darn close to being physical medicine/rehab and/or what I call "practical rheumatology." he is a super nice guy, but hes southern so may have to explain yourself a few times hasn't learned to speak "Montana" yet (he may have progressed since I last met him.)
If you can't get past the front desk Riverstone will try and make a general appointment, just be firm an say who you want to see and why. They will relent.
thank you I will do that tntlamb.
Thank you everyone! I so appreciate everyone’s input! can you tell me specifically some of the foods you are adding and some you are eliminating?
Also, I’d really like to hear people’s Remicade experiences.
SublimeAmiga said:
I have been trying to add foods that are listed as Anti-inflammatory and take out foods that cause inflammation.
Well, here is a good web page that gives a lot of examples at the bottom for different types of foods that are the top anti-inflammatory foods/spices: http://edibleevolution.blogspot.com/2009/06/anti-inflammatory-recipes-and-foods.html?m=1
and here is a good web page that will discuss what foods cause inflammation and it also has a lot of other good advice: http://www.squidoo.com/foods-that-promote-chronic-inflammation
JDT said:
Thank you everyone! I so appreciate everyone's input! can you tell me specifically some of the foods you are adding and some you are eliminating?
Also, I'd really like to hear people's Remicade experiences.
SublimeAmiga said:I have been trying to add foods that are listed as Anti-inflammatory and take out foods that cause inflammation.
1 Like
Great! Thank you! You just saved me a ton of Google searching, I appreciate it!
SublimeAmiga said:
Well, here is a good web page that gives a lot of examples at the bottom for different types of foods that are the top anti-inflammatory foods/spices: http://edibleevolution.blogspot.com/2009/06/anti-inflammatory-recip...
and here is a good web page that will discuss what foods cause inflammation and it also has a lot of other good advice: http://www.squidoo.com/foods-that-promote-chronic-inflammation
JDT said:Thank you everyone! I so appreciate everyone's input! can you tell me specifically some of the foods you are adding and some you are eliminating?
Also, I'd really like to hear people's Remicade experiences.
SublimeAmiga said:I have been trying to add foods that are listed as Anti-inflammatory and take out foods that cause inflammation.
I don't believe a diet can cure PsA. It is a complicated disease. I do firmly believe, however, that diet can have a profound effect on how your body tolerates the medications used to treat PsA. All the NSAIDS, DMARDS, and biologics have side effects. Unfortunately, in most cases of PsA these drugs are necessary to fight joint destruction and help with pain and inflammation.
When I was diagnosed with celiac disease in 1998 there was very little information out there about how to eat gluten free, heal the gut and quell inflammation in the body. I went back to school and studied nutrition to figure out how I should eat. I have spent many, many years learning how to eat to stay healthy. I have many health issues that are autoimmune in nature and/or genetic so I figure the better I eat the better my body can can cope.
I eat 90% organic, non-gmo food. I eat mostly vegetarian. I do eat salmon for the Omega 3s. I eat lots of vegetables, especially green ones. I eat lots of fruit, nuts, berries. I use olive oil and coconut oil for most cooking and baking. I eat gluten free oats, quinoa, millet, amaranth, and buckwheat. I eat beans and lentils. I use very little sugar in cooking and baking, I haven't had a soda or a fast food meal in 15 years. I pack all my food when I travel. I take probiotics.
I am very strict. I make my own body care products from organic ingredients, I make my own "green" cleaners, etc. I avoid as much chemical exposure as I can afford to. I sleep on an organic mattress, I use no-VOC paints in my house, I limit my rice products due to arsenic exposure, I don't use canned goods because of BPA.
I used to exercise a lot. I ran, did yoga, pilates, etc. Now, I exercise when I can.
My point to outlining what I eat and use on my body and in my home is to say that even with being as strict as I am - I still developed PsA and my symptoms and pain are getting worse not better. I take Sulfasalazine daily and Ibuprofin when needed. I think I am going to need to try MTX soon. However, I don't have to worry that I have heart disease or diabetes on top of PsA. My cholesterol is perfect, my glucose is perfect, my blood pressure is perfect.
So I may have inflammation in my body because of PsA, but I don't have heart disease, high blood pressure or diabetes on top of it. I haven't had a cold in 8 years. Just a sniffle here and there. I haven't had the flu since I was a kid even though my husband had it last year. I am fairly certain having PsA and the flu would not feel good. So I do everything I can to keep my body running so it can handle the toxic effects of the medications easier and I don't get the day to day colds that are out there during winter.
So I say eat as healthy as you can!!
I think this is one of THE BEST replies about diet I have seen! :-) I really agree with you 100%! Now if only I could find something for my PsA that isn't an NSAID or something that suppresses the immune system.....
Crabbygirl said:
I don't believe a diet can cure PsA. It is a complicated disease. I do firmly believe, however, that diet can have a profound effect on how your body tolerates the medications used to treat PsA. All the NSAIDS, DMARDS, and biologics have side effects. Unfortunately, in most cases of PsA these drugs are necessary to fight joint destruction and help with pain and inflammation.
When I was diagnosed with celiac disease in 1998 there was very little information out there about how to eat gluten free, heal the gut and quell inflammation in the body. I went back to school and studied nutrition to figure out how I should eat. I have spent many, many years learning how to eat to stay healthy. I have many health issues that are autoimmune in nature and/or genetic so I figure the better I eat the better my body can can cope.
I eat 90% organic, non-gmo food. I eat mostly vegetarian. I do eat salmon for the Omega 3s. I eat lots of vegetables, especially green ones. I eat lots of fruit, nuts, berries. I use olive oil and coconut oil for most cooking and baking. I eat gluten free oats, quinoa, millet, amaranth, and buckwheat. I eat beans and lentils. I use very little sugar in cooking and baking, I haven't had a soda or a fast food meal in 15 years. I pack all my food when I travel. I take probiotics.
I am very strict. I make my own body care products from organic ingredients, I make my own "green" cleaners, etc. I avoid as much chemical exposure as I can afford to. I sleep on an organic mattress, I use no-VOC paints in my house, I limit my rice products due to arsenic exposure, I don't use canned goods because of BPA.
I used to exercise a lot. I ran, did yoga, pilates, etc. Now, I exercise when I can.
My point to outlining what I eat and use on my body and in my home is to say that even with being as strict as I am - I still developed PsA and my symptoms and pain are getting worse not better. I take Sulfasalazine daily and Ibuprofin when needed. I think I am going to need to try MTX soon. However, I don't have to worry that I have heart disease or diabetes on top of PsA. My cholesterol is perfect, my glucose is perfect, my blood pressure is perfect.
So I may have inflammation in my body because of PsA, but I don't have heart disease, high blood pressure or diabetes on top of it. I haven't had a cold in 8 years. Just a sniffle here and there. I haven't had the flu since I was a kid even though my husband had it last year. I am fairly certain having PsA and the flu would not feel good. So I do everything I can to keep my body running so it can handle the toxic effects of the medications easier and I don't get the day to day colds that are out there during winter.
So I say eat as healthy as you can!!
Thanks so much for t his! It really helps keep it in perspective. I've had several people tell me to make dietary changes so I don't need meds. I need to make dietary changes for overall health, I know that. I mostly eat healthy, but do sometimes find myself skimping on veggies due to the amount of work it takes. I do sometimes rely on processed foods, though try to choose lower sodium options. I'm just so tired, that I don't want to cook a meal every night that requires a lot of work. But I guess the message is, I'll be less tired, if I do the work it takes to be more healthy. I'm going to invest in a Vitamix, my sister has one and has been able to get her ulcerative colitis under great control and also reduce her meds by half. I think I see a lot of green smoothies in my future! :)
Crabbygirl said:
I don't believe a diet can cure PsA. It is a complicated disease. I do firmly believe, however, that diet can have a profound effect on how your body tolerates the medications used to treat PsA. All the NSAIDS, DMARDS, and biologics have side effects. Unfortunately, in most cases of PsA these drugs are necessary to fight joint destruction and help with pain and inflammation.
When I was diagnosed with celiac disease in 1998 there was very little information out there about how to eat gluten free, heal the gut and quell inflammation in the body. I went back to school and studied nutrition to figure out how I should eat. I have spent many, many years learning how to eat to stay healthy. I have many health issues that are autoimmune in nature and/or genetic so I figure the better I eat the better my body can can cope.
I eat 90% organic, non-gmo food. I eat mostly vegetarian. I do eat salmon for the Omega 3s. I eat lots of vegetables, especially green ones. I eat lots of fruit, nuts, berries. I use olive oil and coconut oil for most cooking and baking. I eat gluten free oats, quinoa, millet, amaranth, and buckwheat. I eat beans and lentils. I use very little sugar in cooking and baking, I haven't had a soda or a fast food meal in 15 years. I pack all my food when I travel. I take probiotics.
I am very strict. I make my own body care products from organic ingredients, I make my own "green" cleaners, etc. I avoid as much chemical exposure as I can afford to. I sleep on an organic mattress, I use no-VOC paints in my house, I limit my rice products due to arsenic exposure, I don't use canned goods because of BPA.
I used to exercise a lot. I ran, did yoga, pilates, etc. Now, I exercise when I can.
My point to outlining what I eat and use on my body and in my home is to say that even with being as strict as I am - I still developed PsA and my symptoms and pain are getting worse not better. I take Sulfasalazine daily and Ibuprofin when needed. I think I am going to need to try MTX soon. However, I don't have to worry that I have heart disease or diabetes on top of PsA. My cholesterol is perfect, my glucose is perfect, my blood pressure is perfect.
So I may have inflammation in my body because of PsA, but I don't have heart disease, high blood pressure or diabetes on top of it. I haven't had a cold in 8 years. Just a sniffle here and there. I haven't had the flu since I was a kid even though my husband had it last year. I am fairly certain having PsA and the flu would not feel good. So I do everything I can to keep my body running so it can handle the toxic effects of the medications easier and I don't get the day to day colds that are out there during winter.
So I say eat as healthy as you can!!
I used to feel the same way and sometimes I don't want to cook a meal. It's hard to find the motivation and effort. I understand completely. I do feel a heck of a lot better since I cut out processed foods and going out to eat. I think in the beginning if you can adjust slowly and try to do it a few days a week you will see the difference and that will help. I know in the beginning I didn't always stick to it and I cheated a few days a week. Now I have gotten a lot more disciplined with it because every time I eat something bad for me I pay for it.... lol
JDT said:
Thanks so much for t his! It really helps keep it in perspective. I've had several people tell me to make dietary changes so I don't need meds. I need to make dietary changes for overall health, I know that. I mostly eat healthy, but do sometimes find myself skimping on veggies due to the amount of work it takes. I do sometimes rely on processed foods, though try to choose lower sodium options. I'm just so tired, that I don't want to cook a meal every night that requires a lot of work. But I guess the message is, I'll be less tired, if I do the work it takes to be more healthy. I'm going to invest in a Vitamix, my sister has one and has been able to get her ulcerative colitis under great control and also reduce her meds by half. I think I see a lot of green smoothies in my future! :)
Crabbygirl said:I don't believe a diet can cure PsA. It is a complicated disease. I do firmly believe, however, that diet can have a profound effect on how your body tolerates the medications used to treat PsA. All the NSAIDS, DMARDS, and biologics have side effects. Unfortunately, in most cases of PsA these drugs are necessary to fight joint destruction and help with pain and inflammation.
When I was diagnosed with celiac disease in 1998 there was very little information out there about how to eat gluten free, heal the gut and quell inflammation in the body. I went back to school and studied nutrition to figure out how I should eat. I have spent many, many years learning how to eat to stay healthy. I have many health issues that are autoimmune in nature and/or genetic so I figure the better I eat the better my body can can cope.
I eat 90% organic, non-gmo food. I eat mostly vegetarian. I do eat salmon for the Omega 3s. I eat lots of vegetables, especially green ones. I eat lots of fruit, nuts, berries. I use olive oil and coconut oil for most cooking and baking. I eat gluten free oats, quinoa, millet, amaranth, and buckwheat. I eat beans and lentils. I use very little sugar in cooking and baking, I haven't had a soda or a fast food meal in 15 years. I pack all my food when I travel. I take probiotics.
I am very strict. I make my own body care products from organic ingredients, I make my own "green" cleaners, etc. I avoid as much chemical exposure as I can afford to. I sleep on an organic mattress, I use no-VOC paints in my house, I limit my rice products due to arsenic exposure, I don't use canned goods because of BPA.
I used to exercise a lot. I ran, did yoga, pilates, etc. Now, I exercise when I can.
My point to outlining what I eat and use on my body and in my home is to say that even with being as strict as I am - I still developed PsA and my symptoms and pain are getting worse not better. I take Sulfasalazine daily and Ibuprofin when needed. I think I am going to need to try MTX soon. However, I don't have to worry that I have heart disease or diabetes on top of PsA. My cholesterol is perfect, my glucose is perfect, my blood pressure is perfect.
So I may have inflammation in my body because of PsA, but I don't have heart disease, high blood pressure or diabetes on top of it. I haven't had a cold in 8 years. Just a sniffle here and there. I haven't had the flu since I was a kid even though my husband had it last year. I am fairly certain having PsA and the flu would not feel good. So I do everything I can to keep my body running so it can handle the toxic effects of the medications easier and I don't get the day to day colds that are out there during winter.
So I say eat as healthy as you can!!
You are exactly right! You have to go slow and go at a pace you are comfortable with. Any healthy change you make is for the better. It took me YEARS to get to the point I am today and I am always researching and making changes. I didn't change everything overnight. I have "fallen off the wagon" many times over the years and that is okay.
I completely understand the fatigue and not wanting to cook! There are many days, especially recently, that it is a struggle to even get out of bed. I am having to learn how to adapt to my current needs. Right now my fatigue can be overwhelming, my knee and ankle are terribly swollen, my back hurts, etc. So some days are easier than others. Honestly, you don't have to cook huge involved meals to eat healthy. It is much simplier than it seems. It can feel overwhelming at first but the longer you do it the easier it gets. Here are few suggestions on how to get started.
Pick one or two things you want to focus on at first. Such as adding more green vegetables to your diet, adding a probiotic, or learning which fruits and veggies have the highest levels of pesticides and switch to organic. The Environmental Working Group has a list you can print and take with you to the store. www.ewg.org When it comes to eating organic, do what you can. Not everyone can afford to eat 100% organic. This is a choice I make that is very important to me. I make sacrificies in other areas so that I can do it. So choose your comfort level, feel great about it and go with it. Any change is positive.
Pick a time when you are having a "good" day. Use it to cook one large dish (like soup) or several smaller dishes. Freeze anything you can so you have a meal in the freezer for days that are not so good.
Cook in large batches. I eat a lot of soups, especially in the winter. It is a great way to get lots of veggies with minimal fuss. You can cook a large batch of quinoa or other grain and use it throughout the week with different meals. Cut up veggies to snack on throughout the week.
Make "snack" foods and freeze them for when you need something on the go or when you are not up to cooking. I make my own granola and store it for 2 weeks. I make peanut butter coconut balls that I freeze and one batch will last a week or two.
Invest in a good blender or Vitamix if you can afford it. I have a Vitamix and I LOVE it. I make large batches of green smoothies and fruit smoothies and freeze the leftovers.
Ask friends/family for help. I enroll the help of my daughter (17) and my mom to help me cook these big batches whenever possible.
These are just a few ideas to help you get started. Hopefully, you will find them useful. The most important thing to remember is that you have to work on changes at your comfort level. Even one change is beneficial.
Good luck! I am here if you have questions :)
Great advice!! Thank you. I splurged and ordered a Vitamix and it'll be here on Friday! I can't wait. Now to make my shopping list and start making healthier things to eat. I'm really excited. I know I'm going to start each day with a smoothie. Do you use a protein source in your smoothies?
I plan to make our own nut butters and hummus (which I've been doing for a while now) as well as making my own tahini so I can stop buying the ridiculously expensive stuff!
My daughter (she's almost 7) is excited to start eating things "mostly from nature" as I've described it to her. I want to focus on what's good for us with her so she doesn't end up with any hang ups!
I think I'd like to make my own granola bars. I tend to use those for snacks at work and the store bought ones don't seem has healthy as they should be.
So thank you! I'm off to hunt for recipes. Please share if you have any particular Vitamix favorites! :)
~jackie
Crabbygirl said:
You are exactly right! You have to go slow and go at a pace you are comfortable with. Any healthy change you make is for the better. It took me YEARS to get to the point I am today and I am always researching and making changes. I didn't change everything overnight. I have "fallen off the wagon" many times over the years and that is okay.
I completely understand the fatigue and not wanting to cook! There are many days, especially recently, that it is a struggle to even get out of bed. I am having to learn how to adapt to my current needs. Right now my fatigue can be overwhelming, my knee and ankle are terribly swollen, my back hurts, etc. So some days are easier than others. Honestly, you don't have to cook huge involved meals to eat healthy. It is much simplier than it seems. It can feel overwhelming at first but the longer you do it the easier it gets. Here are few suggestions on how to get started.
Pick one or two things you want to focus on at first. Such as adding more green vegetables to your diet, adding a probiotic, or learning which fruits and veggies have the highest levels of pesticides and switch to organic. The Environmental Working Group has a list you can print and take with you to the store. www.ewg.org When it comes to eating organic, do what you can. Not everyone can afford to eat 100% organic. This is a choice I make that is very important to me. I make sacrificies in other areas so that I can do it. So choose your comfort level, feel great about it and go with it. Any change is positive.
Pick a time when you are having a "good" day. Use it to cook one large dish (like soup) or several smaller dishes. Freeze anything you can so you have a meal in the freezer for days that are not so good.
Cook in large batches. I eat a lot of soups, especially in the winter. It is a great way to get lots of veggies with minimal fuss. You can cook a large batch of quinoa or other grain and use it throughout the week with different meals. Cut up veggies to snack on throughout the week.
Make "snack" foods and freeze them for when you need something on the go or when you are not up to cooking. I make my own granola and store it for 2 weeks. I make peanut butter coconut balls that I freeze and one batch will last a week or two.
Invest in a good blender or Vitamix if you can afford it. I have a Vitamix and I LOVE it. I make large batches of green smoothies and fruit smoothies and freeze the leftovers.
Ask friends/family for help. I enroll the help of my daughter (17) and my mom to help me cook these big batches whenever possible.
These are just a few ideas to help you get started. Hopefully, you will find them useful. The most important thing to remember is that you have to work on changes at your comfort level. Even one change is beneficial.
Good luck! I am here if you have questions :)
butter said:
Hi all,
Some very interesting reading. I have had psoriasis since 1959 and ten years ago my body began aching. I have seen many specialists who tell me that I have polyneuropathy and fibromyalgia or so they think..I did mention my psoriasis but none have linked me up with psoriasis and arthritis or anything else. I have three bulging discs lower back and now have pain constantly from my lower back to hips, legs, thighs, knees, calves and feet. It is never in one place and roams ..polyneuropathy. That is about it...I am on many meds but never out of pain...I cannot walk very far, less than 100 yards and if I over do it with walking or any kind of excitement, the next day my pain is worse. I would like to confirm that I either have psa but how do I do it. Is it possible to have three things, polyneuropathy, fibromyalgia and psa. My doctors have given up on me and now it is just meds that do little but help some. Any help would be appreciated.
Butter