anyone here with Rhematoid or oseto arthritis?
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Probably Psoriatic arthritis, though a friend who has it usually uses PsA as the abbreviation.2 -
GaleHawkins wrote: »Angiefit4life wrote: »I have AS and on humira. I try to do my best to walk. Walking helps a lot. Yes cold weather makes it worse but honest try to move when you can!
Walking is good. 45 years ago I was told I had AS (Ankylosing Spondylitis) and it has fused most of my joints and took out my hips to the point I had both replaced Aug 1991.
With mobility becoming very hard and my health crashing and the pain was over the top the doctors wanted me to start on Enbrel injections in 90 days or Nov 2014 at the age of 63. I felt there had to be non Rx solution for my pain plus a pharmacist that I have known for like 50 years said to avoid Enbrel type meds.
Oct 2014 on a hunch I cut out all foods containing added sugar and any form of any grain. The first two weeks of withdrawal like symptoms was hellish but at the end of 30 days my pain level was down from years of levels in the 7-8 range to 2-3 so I passed on Rx meds. Now nearly 4 years later of eating this way my pain level stays under 1 most all of the time and years of damage is improving slightly.
Now at 67 my health and range of motion is better than decades ago in my case.
What drove me to act on my hunch was our kids were 16 and watching my health fail wondering it this was their future.
Later I learned about LCHF and realized that was what I was doing before knew it had a name. Not sure if what I did applies to another human or not and I do not tell others how to eat even in my household.
While my pain is now well managed by the way I eat and move a big drop in barometric makes want to not even to move because I feel like I must weigh a ton. Cold is not so bad anymore because I stay much warmer eating LCHF high calorie diet. I gave up on trying to lose weight after 40 years of yo-yoing weight with 100+% regains after every weight loss yet the first year of eating LCHF I did lose 50 pounds and have been at 195 +/- 5 pounds for the past 3 years without thought.
Yes I got lucky to find out what was triggering my autoimmune disease(s) in a general way even if I as 63 with a lot of damage. I read research daily on this subject and expect to do so for the rest of my life.
Not sure what may work for you or others if anything but just keep reading and walking as much as you can. I was down to using the powered carts at WalMart and now I can walk for miles at a time. I was at a tradeshow in WI before I changed my way of eating in 2014 then back a year later and had my 17 year old daughter with me. He said it was good to see us and that he had met my father the year before and asked about his health. When I told him it was me that he met the year before he was blown away that I was walking well and managing my own luggage on the escalator.
Keep moving and reading on living with autoimmune diseases. Sometimes it is the bottom of page 10 in a Google search before I hit pay dirt.
Best of success and keep in mind others will never grasp what we are experiencing. We will hear a lot of 'advice' that makes us want to say, "Just Drop Dead" but negativity is not positive for our health issues.
What a great post. Thank you for taking the time. Most def will read several times. I’m 40 and was diagnosed in 2014 and after needing a Thoracentesis I had no options left. My rheumatologist and pcm have worked so well together. I’ve been trying to eat more Whole Foods and researching more. Would love a hands on book with foods. I’ve seen what this disease has done to my dad (though diagnosed incorrectly I believe back in the 80’s.
Hopefully my response wasn’t hjacking the Op.
I’m not looking forward to walks in the cold though.3 -
Angiefit4life- not hijacking! Anything that helps another person with this is helpful!
GaleHawkins- Thanks. I had actually ordered a cookbook on "anti inflammatory " cooking. I actually am not the cook in the house, my husband is, but he'll do anything I request.
Thanks to all of you for your help!
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I have OA in my hands, feet, hip and now knee. I find damp has a bigger effect than heat or cold although admittedly, Canadian winters do make my joint pain worse. At my last appointment five months ago, my rheumatologist gave me a sample of an over the counter medication called Oralvisc and asked me to try it and let her know if it worked for me. I had to order it off the internet as I couldn't find anywhere that carried it. Much to my amazement it really works well on my pain and mobility. I can bend and wiggle my big toes for the first time in years and my hands are pain free. I had thought it was my imagination that things were better until I ran out of pills and had to order more. I had forgotten how much pain I had been in before I started it! Have 3 packs now so that won't happen again! I am now off all pain meds.3
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jelaan, I am so glad you found something that works for you!
You all take care!
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CarvedTones wrote: »
Probably Psoriatic arthritis, though a friend who has it usually uses PsA as the abbreviation.
Yes, psoriatic arthritis. PA or PsA It's similar to RA in that it's an autoimmune disorder.2 -
Degenerative osteoarthritis in my big toe joints. Already had one surgery.
Moved south of the MDL back in 2008 for a job. Worked out for weather too. Less issues with joints. And my wife has spondyloarthritis.3 -
I have AS. Ankylosing Spondylitis- as some here have mentioned. I also have OA in a few joints. Diet helps some. @GaleHawkins post is inspiring! Sometimes certain foods or incoming high pressure storms make me flair up badly. So bad that going to work is such a task. I work at a Hospital and there’s no calling in sick unless there’s an emergency or you’re contagious so I just have to take my heating pad (being cold is SO much worse on my body), some coffee, some Tylenol and deal with it. I take Enbrel shots. Humera didn’t help at all and my insurance won’t cover Simponi. My sister has RA- she is on methotrexate and humera. We both take dicolfenac in place of daily OTC NSAIDS. Drinking extra water helps too and I can tell when I haven’t done well with it.3
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I also have AS. It took 25 years to get any doctors to pay attention and accept that I had a problem, but we got there finally. I was put on a Simponi trial and it did nothing for me, moved to Humira which showed some improvement and now on double dose Humira fortnightly injections which is really helping. I'm off Naproxen (NSAIDS) after feeling good enough to actually do real exercise. My walking stick is gone and mostly joint pain eased significantly. I've gone from 300 yards maximum to 1 1/2 mile walks with ease, which has allowed me to consider pushing for 100lb weight loss. I may have the possibility of a future, which I'd about given up hope of 5 years ago.
I do find it interesting how some of us respond to some drugs and not others...very weird indeed.1 -
belladamjc wrote: »I also have AS. It took 25 years to get any doctors to pay attention and accept that I had a problem, but we got there finally. I was put on a Simponi trial and it did nothing for me, moved to Humira which showed some improvement and now on double dose Humira fortnightly injections which is really helping. I'm off Naproxen (NSAIDS) after feeling good enough to actually do real exercise. My walking stick is gone and mostly joint pain eased significantly. I've gone from 300 yards maximum to 1 1/2 mile walks with ease, which has allowed me to consider pushing for 100lb weight loss. I may have the possibility of a future, which I'd about given up hope of 5 years ago.
I do find it interesting how some of us respond to some drugs and not others...very weird indeed.
I agree we all respond differently.
I can honestly say humira saved my life.
I took methotrexate and I lost my voice for 6 weeks. I think my husband was happy 😂
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Lots of Humira folks! I don't have arthritis but I take it for Crohn's. I find it painful and I also get an injection site reaction so itchy!3
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singingflutelady wrote: »Lots of Humira folks! I don't have arthritis but I take it for Crohn's. I find it painful and I also get an injection site reaction so itchy!
Always ask your dr but I was advised to let it sit on the counter for about 15 mins before. And stomach injections hurt way less than thigh. Sounds weird but I promise. And the itchy site reaction does stop. I’m assuming you haven’t been on it long.
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Angiefit4life wrote: »singingflutelady wrote: »Lots of Humira folks! I don't have arthritis but I take it for Crohn's. I find it painful and I also get an injection site reaction so itchy!
Always ask your dr but I was advised to let it sit on the counter for about 15 mins before. And stomach injections hurt way less than thigh. Sounds weird but I promise. And the itchy site reaction does stop. I’m assuming you haven’t been on it long.
I have been on since nov 2017. I didn't have the itchy reaction until february. Unfortunately atm I am severely underweight and had to stop doing it in my stomach as I don't have enough fat there anymore. Humira is my second biologic. I was on Remicade for 2 years but had to go off because I had surgery and couldn't go back on it because of antibodies.1 -
singingflutelady wrote: »Angiefit4life wrote: »singingflutelady wrote: »Lots of Humira folks! I don't have arthritis but I take it for Crohn's. I find it painful and I also get an injection site reaction so itchy!
Always ask your dr but I was advised to let it sit on the counter for about 15 mins before. And stomach injections hurt way less than thigh. Sounds weird but I promise. And the itchy site reaction does stop. I’m assuming you haven’t been on it long.
I have been on since nov 2017. I didn't have the itchy reaction until february. Unfortunately atm I am severely underweight and had to stop doing it in my stomach as I don't have enough fat there anymore. Humira is my second biologic. I was on Remicade for 2 years but had to go off because I had surgery and couldn't go back on it because of antibodies.
@singingflutelady I’m sorry. I had a reaction for about 6 months. It’s awful. I’ve been on his since spring 2014.
I hope you are able to return to stomach injections soon. And I hope you’ve have a supportive rheumatologist!
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Angiefit4life wrote: »singingflutelady wrote: »Angiefit4life wrote: »singingflutelady wrote: »Lots of Humira folks! I don't have arthritis but I take it for Crohn's. I find it painful and I also get an injection site reaction so itchy!
Always ask your dr but I was advised to let it sit on the counter for about 15 mins before. And stomach injections hurt way less than thigh. Sounds weird but I promise. And the itchy site reaction does stop. I’m assuming you haven’t been on it long.
I have been on since nov 2017. I didn't have the itchy reaction until february. Unfortunately atm I am severely underweight and had to stop doing it in my stomach as I don't have enough fat there anymore. Humira is my second biologic. I was on Remicade for 2 years but had to go off because I had surgery and couldn't go back on it because of antibodies.
@singingflutelady I’m sorry. I had a reaction for about 6 months. It’s awful. I’ve been on his since spring 2014.
I hope you are able to return to stomach injections soon. And I hope you’ve have a supportive rheumatologist!
I'm on it for Crohn's so I don't have a rheumatologist just a GI.0 -
Oh yes, I have RA, fibro, and osteoarthritis. I've had 1 total knee and my other knee is also bone on bone. My spine, neck are severely affected as well. My ankles have completely protonated and my mobility is very limited. My pain level is constant and exercise causes increased pain and swelling. I do what I can on my good days but some days it's difficult to maintain my daily chores. I do avoid sugars, saturated fats, and all the other foods that trigger inflammation but it's hard to say if it helps or not. Being obese is the absolute worst thing I could do. Cold, damp weather makes my stiffness much more prominent. I can't take humira because of my weakened immune system and other health issues. Right now I use pain meds 3 times a day. My best advice is to lose weight and I don't think there is any single thing more important you can do.1
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I have RA and OA. Get a proper diagnosis for RA, there are great medications to treat it now. Diet alone will not ‘cure’ it. I follow Paleo to feel healthy and keep my weight in check but it’s my meds that keep my RA in check. You get extreme fatigue with RA. I live in a hot country and if I get too hot it doesn’t help with this. The cold however is horrible for joints. I have OA in L 3 and 4 also. I also exercise, do pilates, cycle and do light weights, best thing I ever did, it’s great way to build and strengthen the muscles that support your joints. Good luck and just embrace the change and enjoy!!2
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IT is heartwarming to hear all this advice and support.
I was all set to call my pcp yesterday, but by the time the office opened, my hands were almost normal. Last night, I could squeeze my hands tight, type, and I felt "normal."
I woke up this am with tightness and soreness in my right hand, again. Not as bad as it was, but it's definitely still there; I can feel it when I type. I am due for regular blood work at my PCP at end of oct; I'm going to call and ask if they will do it this week instead and add tests for RA and for ET (essential thrombocythemia). My mom passed from ET. My younger sister has RA.
The good news is that I lost some of the pity weight I gained. I had weight and diet trained myself to 150 after I retired. After my disc extruded and I was unable to work out, and I haven't been able to lift or do anything, even yoga, since March. I put on weight because I was pity-bored-unable to work out. I'm now down to 154 with a goal of 140. My trainer told me weighing less than that would not be good on me; I'm 5'10" so that's fine with me.
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IT is heartwarming to hear all this advice and support.
I was all set to call my pcp yesterday, but by the time the office opened, my hands were almost normal. Last night, I could squeeze my hands tight, type, and I felt "normal."
I woke up this am with tightness and soreness in my right hand, again. Not as bad as it was, but it's definitely still there; I can feel it when I type. I am due for regular blood work at my PCP at end of oct; I'm going to call and ask if they will do it this week instead and add tests for RA and for ET (essential thrombocythemia). My mom passed from ET. My younger sister has RA.
The good news is that I lost some of the pity weight I gained. I had weight and diet trained myself to 150 after I retired. After my disc extruded and I was unable to work out, and I haven't been able to lift or do anything, even yoga, since March. I put on weight because I was pity-bored-unable to work out. I'm now down to 154 with a goal of 140. My trainer told me weighing less than that would not be good on me; I'm 5'10" so that's fine with me.
In the beginning my PCM didn’t do a C- Reactive protein test. I didn’t get one to I actually got into a rheumatologist and my level was 136! Be sure to ask your doctor about this. It was so frustrating I was in so much pain. Good luck!!!!
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Angiefit4life wrote: »IT is heartwarming to hear all this advice and support.
I was all set to call my pcp yesterday, but by the time the office opened, my hands were almost normal. Last night, I could squeeze my hands tight, type, and I felt "normal."
I woke up this am with tightness and soreness in my right hand, again. Not as bad as it was, but it's definitely still there; I can feel it when I type. I am due for regular blood work at my PCP at end of oct; I'm going to call and ask if they will do it this week instead and add tests for RA and for ET (essential thrombocythemia). My mom passed from ET. My younger sister has RA.
The good news is that I lost some of the pity weight I gained. I had weight and diet trained myself to 150 after I retired. After my disc extruded and I was unable to work out, and I haven't been able to lift or do anything, even yoga, since March. I put on weight because I was pity-bored-unable to work out. I'm now down to 154 with a goal of 140. My trainer told me weighing less than that would not be good on me; I'm 5'10" so that's fine with me.
In the beginning my PCM didn’t do a C- Reactive protein test. I didn’t get one to I actually got into a rheumatologist and my level was 136! Be sure to ask your doctor about this. It was so frustrating I was in so much pain. Good luck!!!!
Another one that isn't commonly done is HLA-B27. Even though ~90% of AS patients have the antigen, I kind of get why they don't often test for it. Less than 2% of people with the antigen have AS or reactive arthritis or undifferentiated spondylitis or other conditions that seem to have a strong correlation. But if other members of your immediate family also have the antigen, your chances jump up to about 20%. If other members of your family have the antigen and one of the conditions your risk is closer to 50%. Yeah, I have it as do my siblings and one parent and there are some related conditions. My older sister has RA, which isn't commonly associated with it and a couple of us have undifferentiated spondylitis, which is pretty much milder AS symptoms without any fusion. My grandfather was crippled by severe AS.2
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