Let me suggest a concoction of a drink that I have tried and has been helping me. I try to incorporate as many anti-inflammatory spices into 1 drink. Try to buy organic honey, cinnamon, turmeric, ginger, and cayenne pepper. I mix them all together with hot water and make a sort of tea drink. Believe it or not this has seemed to help.
I also drink 100% mangosteen juice. I buy this thru a supplier because I don't know where to get it otherwise. Also try going dairy and gluten free if you can. All of these things help with inflammation.
I have tried turmeric and cinnamon. Of course we need to avoid anything that isn’t pasteurized so I always get commercially processed honey for myself :-(.
I really haven’t found much relief with diet or naturopathy. I am on a strict diet for IBS, and it works wonderfully for that, and overall, I do feel healthier. I have not noticed any impact on my PsA symptoms though. I wish the anti inflammatory diet or herbs helped. I know people who swear by turmeric and cinnamon.
Thank you for writing though!
strugglingmusician said:
Let me suggest a concoction of a drink that I have tried and has been helping me. I try to incorporate as many anti-inflammatory spices into 1 drink. Try to buy organic honey, cinnamon, turmeric, ginger, and cayenne pepper. I mix them all together with hot water and make a sort of tea drink. Believe it or not this has seemed to help.
I also drink 100% mangosteen juice. I buy this thru a supplier because I don't know where to get it otherwise. Also try going dairy and gluten free if you can. All of these things help with inflammation.
I quit my job in June and have pretty much been off radar since then! I did get a wonderful job which will start on 8/19. I will get to be the sort of nurse I like to be AND work with my favorite people: Seniors.
I was also doing pretty well emotionally, but I have obviously hit the skids. It’s so hard to be on here when you feel good because you want to be doing other things! I’ve been writing and really enjoying that.
I have missed you guys and the comfort I gain from being here and reading everyone’s stories and helping where I can. This group does get to be a second family after a time, doesn’t it?
You are right, Stoney. It’s rare that I have increased inflammatory labs. I really do need to push him to keep looking. I think he will; he’s just that sort of doc AND he didn’t seem satisfied with “idiopathic arthropathy” any more than I did. (I’m pretty good at reading people)
Stoney said:
You pointed out that your labs don't show inflammation. But for some people, that's true all of the time, and is not a good indicator of disease activity. My rheumy has to make treatment decisions based on my complaints, and feeling for inflammation.
I can totally relate to what you are saying and I am very sorry to hear what you are going through. Hope you are able to find something that will help you improve soon.
Rest seems about the best thing I can do for myself. The more I try and do and push myself the worse I get. For me it is all about gauging my pain, usually by making an assessment of myself about an hour after I get up out of bed each day and after my meds, what I will be able to do or not do. I have reached my retirement years and can afford to do this and I do understand this is not possible for everyone.
I no longer allow myself to become frustrated or stressed as I know only too well that stress will make things worse. I do what I can and use relaxation techniques and Tai Chi when I can. I also make sure I feed my body with as much good nutrition as I can to help repair damaged cells and boost my immune system. I also make sure I am prepared for the days when I can't get out and about and I keep a good stock on hand with plenty of movies to watch to help me keep my mind off my pain as much as I can.
Sometimes it can be like chasing rainbows looking for answers. I find it is more important to focus on the best treatment I can. I am at the point where I don't think I will find answers from my doctors as I don't think they know or understand the full extent of how this illness and how it affect me. All I can manage is getting through each day in the best way I can. I am at the stage where all I can hope for is to get my pain down to a level where I can manage to live with it. I also wonder if I have something else as well as I don't think I should be this bad.
My blood tests high or normal are no indication on how I feel. My Rhuem tells me that the nodules on my finger joints are due to Osteo A but I am not completely convinced this is a correct diagnoses, he also puts the pain in my hips down to Osteo A and not my PSA.
Do let us know if you do find something that helps you improve as it might also help others.
Have you tried Glucosamine Sulfate? It is an herbal pill you take with a meal, I take 1000mg 3 times a day and found it is helping along with the exercise I do. I walk daily! I also stretch a lot. I was diagnosed several times with tendonitis and they could never figure out why. I would do physical therapy and it was amazing how fast I could heal. I have print outs of all my exercises I can do for the pain and most of them work if I keep up on them. I have been taking out any food that causes inflammation, I seen a documentary on this for arthritis. I also have been adding any foods that are anti-inflammatories as well.
GrumpyCat said:
I have tried turmeric and cinnamon. Of course we need to avoid anything that isn't pasteurized so I always get commercially processed honey for myself :-(.
I really haven't found much relief with diet or naturopathy. I am on a strict diet for IBS, and it works wonderfully for that, and overall, I do feel healthier. I have not noticed any impact on my PsA symptoms though. I wish the anti inflammatory diet or herbs helped. I know people who swear by turmeric and cinnamon.
Thank you for writing though!
strugglingmusician said:
Let me suggest a concoction of a drink that I have tried and has been helping me. I try to incorporate as many anti-inflammatory spices into 1 drink. Try to buy organic honey, cinnamon, turmeric, ginger, and cayenne pepper. I mix them all together with hot water and make a sort of tea drink. Believe it or not this has seemed to help.
I also drink 100% mangosteen juice. I buy this thru a supplier because I don't know where to get it otherwise. Also try going dairy and gluten free if you can. All of these things help with inflammation.
I cried when I ready your message because I feel the same way on a daily basis and many times feel hopeless. The reality is, we must keep moving. Keep looking into dietary triggers, keep reading, keep exercising now matter how badly it hurts, and no matter what; every morning know that you WILL get through the day but you have to get out of bed first! I'm only 3 months into this diagnosis and still scared and shocked but I'm determined to do all that I can while I can. My life is blessed otherwise and I don't want to miss out on a minute of it. Keep researching and keep your head up!
Why do we need to avoid Unpasteurized honey? I use it almost daily and have been for years. I try and buy as local as possible as it helps with allergies.
GrumpyCat said:
I have tried turmeric and cinnamon. Of course we need to avoid anything that isn’t pasteurized so I always get commercially processed honey for myself :-(.
I really haven’t found much relief with diet or naturopathy. I am on a strict diet for IBS, and it works wonderfully for that, and overall, I do feel healthier. I have not noticed any impact on my PsA symptoms though. I wish the anti inflammatory diet or herbs helped. I know people who swear by turmeric and cinnamon.
Thank you for writing though!
strugglingmusician said:
Let me suggest a concoction of a drink that I have tried and has been helping me. I try to incorporate as many anti-inflammatory spices into 1 drink. Try to buy organic honey, cinnamon, turmeric, ginger, and cayenne pepper. I mix them all together with hot water and make a sort of tea drink. Believe it or not this has seemed to help.
I also drink 100% mangosteen juice. I buy this thru a supplier because I don’t know where to get it otherwise. Also try going dairy and gluten free if you can. All of these things help with inflammation.
Starting your new job may help. There comes a point where you can sit around at home and feel bad or go do things and feel bad. Doing stuff is better entertainment. If this job isn't too physically taxing and if it's work you enjoy, it might be just the thing.
If you think the new doc might just be great, tell him what's going on and give him a chance to be great. Let him know how disillusioned you were with his predecessors, and let him know how discouraged you are. Lab values are only a small part of this- hope this guy knows that. Even if he doesn't, high ANA and RF are pretty significant. You will find some relief, and I hope it is soon.
I use pasteurized honey because of the Remicade infusions. I wouldn’t want to catch something nasty with a lowered immune system.
TaraLynn said:
Why do we need to avoid Unpasteurized honey? I use it almost daily and have been for years. I try and buy as local as possible as it helps with allergies.
GrumpyCat said:
I have tried turmeric and cinnamon. Of course we need to avoid anything that isn't pasteurized so I always get commercially processed honey for myself :-(.
I really haven't found much relief with diet or naturopathy. I am on a strict diet for IBS, and it works wonderfully for that, and overall, I do feel healthier. I have not noticed any impact on my PsA symptoms though. I wish the anti inflammatory diet or herbs helped. I know people who swear by turmeric and cinnamon.
Thank you for writing though!
strugglingmusician said:
Let me suggest a concoction of a drink that I have tried and has been helping me. I try to incorporate as many anti-inflammatory spices into 1 drink. Try to buy organic honey, cinnamon, turmeric, ginger, and cayenne pepper. I mix them all together with hot water and make a sort of tea drink. Believe it or not this has seemed to help.
I also drink 100% mangosteen juice. I buy this thru a supplier because I don't know where to get it otherwise. Also try going dairy and gluten free if you can. All of these things help with inflammation.
Alright so personal choice. I’ve never heard of anyone getting sick from Unpasteurized honey here in British Columbia Canada. I eat a lot of organic and raw food. Actually we grow a lot of our own this time of the year. I better research a little more :-). Thanks!
GrumpyCat said:
I use pasteurized honey because of the Remicade infusions. I wouldn’t want to catch something nasty with a lowered immune system.
TaraLynn said:
Why do we need to avoid Unpasteurized honey? I use it almost daily and have been for years. I try and buy as local as possible as it helps with allergies.
GrumpyCat said:
I have tried turmeric and cinnamon. Of course we need to avoid anything that isn’t pasteurized so I always get commercially processed honey for myself :-(.
I really haven’t found much relief with diet or naturopathy. I am on a strict diet for IBS, and it works wonderfully for that, and overall, I do feel healthier. I have not noticed any impact on my PsA symptoms though. I wish the anti inflammatory diet or herbs helped. I know people who swear by turmeric and cinnamon.
Thank you for writing though!
strugglingmusician said:
Let me suggest a concoction of a drink that I have tried and has been helping me. I try to incorporate as many anti-inflammatory spices into 1 drink. Try to buy organic honey, cinnamon, turmeric, ginger, and cayenne pepper. I mix them all together with hot water and make a sort of tea drink. Believe it or not this has seemed to help.
I also drink 100% mangosteen juice. I buy this thru a supplier because I don’t know where to get it otherwise. Also try going dairy and gluten free if you can. All of these things help with inflammation.
I was in the same situation as you a few years ago. It was an absolute nightmare, and my doctor didn't believe that I was having non arthritic pain, so I ultimately ended up going to a specialist who diagnosed me with FM along with PSA but wasn't interested in actually treating me because FM isn't taken very seriously where I live. So I started trying out things I could do on my own, warm compresses physical therapy and such but one of the most significant changes that I kind of chanced upon was when a friends mother suggested I stop eating nightshades because they are suppose to contribute to inflamation and it helped and alot of my non arthiritic pain was resolved.. and last year when I was in a lot of pain I decided to go gluten free and it helped as well... It sucks to not be able to eat stuff but I just found the alternative unbearable.
GrumpyCat…I hope you find some relief from the pain! I can relate as I’m currently hit in the face with my new reality …usually I flare and then am pain free…not the case anymore I had a mantra that helped me keep positive…this too will pass…new mantra…it could always be worse. Thinking of you, hope you find a way to manage,cope and find some relief from the pain
Well cat woman. I bet you were wondering when I would come on with a "get over it and get on with it speech." (Your "be gentle" was a clue) Well don't worry I'm not. We all have pain that waxes and wanes. I get it. Thats not what you have got. You have a genuine flair not and increase in owie factor. I know you fight hard every day and win most. Something is amiss and a call to the doctor is in order. Were it me I'd ask for a three day (no more) predi burst, but thats me.
I haven't been around a lot lately but could someone tell me when this board switched from supportive, helpful, and informative to the inane crap we get from our uninformed neighbors who don't know PsA from a hangnail. Trust me, capiscan tea is NOT going to help one through a flare. Diet advice is NOT helpful most of the time but especially during a big flare. Its hard not to wish a real flare on someone giving it - a real flare is the kind you end up with joint replacement surgery)
FWIW- NO one taking a DMarD or BIOLOGICAL should ever eat raw (unpasteurized) honey for the exact same reasons pediatricians say to NEVER give it to children under year or so. The naturally occuring bacteria in it is potentially dangerous to weakened or underdeveloped immune systems.
Try High doses of concentrated omega 3. Usually liquid form is very high in EPA & DHA. FDA recommends that you don not exceed 3000 mg. Take also baby Aspirin (100 mg). You have to wait for may be two weeks to see results. I tried it myself. It solved 80% of my problems. Wish you all to be in good health.
A support group is not supposed to allow/encourage negative responses to members. My life is miserable as it is and this just fills me with unwanted stress. This is a place to vent. Our ideas may be off, but it is what we live every day. I stayed out for months to avoid the stress of this site, and it appears as if I need to stay out again until it clears up.
I am looking for a non-threatening place where I can express myself without being judged. The world already gives me enough of that.
Gelita and Lamb are right, of course. Someone who is feeling overwhelmed, and who is a very long way into this battle (as Grumpy Cat and more than a few of us are) really doesn’t need entry-level suggestions, as much as teas, diet, warm baths and OTC remedies etc can help. When someone is exhausted from doing battle with this evil adversary, and they are reaching out for a virtual hug and reassurance, is maybe not the best time to offer that kind of helpful advice. Besides, they’ve probably been there and tried that. Of course, everyone means well, but sometimes “helpful” suggestions become hurtful because they appear to trivialize the person’s misery. Not that they were intended that way, of course. JMHO
In no way was I trying to trivialize what it is that you are going through when I suggested the tea drink and the mangosteen. It appears that some of the people posting on here are trying to turn this into some sort of argument instead of it being a helpful format to explore ALL options.
How are you feeling?
By the way, I noticed that some people are suggesting that PsA indicates a weakened immune system? I was under the impression that our immune systems are working on overdrive...does anyone KNOW?
Of course you weren’t trying to trivialize. You were doing your best to be genuinely helpful. But I’m just saying that sometimes even the best intentions can have an unintended effect, and that we should consider that in our responses. Struggling, I wasn’t pointing a finger at you … we are all here with good intentions.
As for the immune system question, that’s a good one! I look at it as my immune system having decided to do a job it wasn’t assigned. And doing it very very well.
I had a mantra that helped me keep positive…this too will pass…new mantra…it could always be worse. Thinking of you, hope you find a way to manage,cope and find some relief from the pain 
