Yikes…I guess I better research before I comment! I totally did not mean anything negative in commenting in regards to unpasturized honey an I’m sorry if it caused any hard feelings :-). Regardless of how far into this disease we are…we are all trying to find something that will help improve our lives! So far I’ve learned a fair bit here and find the support wonderful! I keep an open mind and have also learned that what works for one may not work for another but regardless of where we are on our path the goal is to support one another :-). On that note grumpycat I hope today is a better day and please know that I am thinking of you and sending you healing thoughts and a ton of cyber hugs! Xox
Seenie said:
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
It's all good...that's exactly it, we are all trying to help. I truly have a belief that we can turn anything around in our bodies through diet and nutrition and although it will not give immediate relief for a flare up, I believe it could prevent future flare ups.
Sorry to hear you're having a difficult time Grumpycat. I feel like I'm in a similar position. Tendon, ligament and possibly even muscle pain in my right leg (hip down into my calf and ankle/foot). Similar trouble with my arms (shoulders down to forearms, into my hands when it's bad). Now my left hip is starting. I have some rather large nodules, the latest is one on my left thumb. Between the almost constant pain and fatigue, I'm overwhelmed and really frustrated. I've been dealing with this for over 20 years. It's really only been bad for the last 5 years (the pain I should say). The fatigue has been with me since day one.
I can totally relate to feeling (and being) beaten down by Rheumatologists who don't have a good grasp of this complex disease. I was fed up last year and managed to get a new Dr. This guy is actually human and has a clue! He cares and seems to know his stuff. He is suggesting that I either have Enthesitis (serious) or possibly even Ankylosing Spondylitis (damn I hope not). I'm waiting to go in for an MRI, he says that's the best way to diagose my situation. That and the cortizone shots he's given me..
I'm struggling to keep my head up lately. The pain and fatigue have me feeling quite low. I'm glad to hear you have a good Dr. now. That's what keeps me going...
I hope things get better for you Grumpycat ... and everyone else suffering right now.
Seenie,
I don’t know if my iPad is behaving ok, so hopefully you’ll get the response.
I have decided that something is afoot. I am 2 days post infusion with very little improvement. Basically, the ball of tendon that I had in my palm has mostly relaxed, but that is about it. I’m in for a call to the rheum on Monday. I need someone who isn’t having constant pain to help me because I just can’t seem to make any sense of my symptoms. There IS something going on. I have no idea what, but after 9 months of Remicade I think I should be improving. I think there is some kind of generalized connective tissue autoimmune whatever happening.
Joints are still swollen, I have DEEP bone ache, tendons are still tight and palpable. Blech.
I’m so sorry you are suffering. It’s so hard. it makes my heart ache to know that others hurt just like i do.
JW said:
Sorry to hear you're having a difficult time Grumpycat. I feel like I'm in a similar position. Tendon, ligament and possibly even muscle pain in my right leg (hip down into my calf and ankle/foot). Similar trouble with my arms (shoulders down to forearms, into my hands when it's bad). Now my left hip is starting. I have some rather large nodules, the latest is one on my left thumb. Between the almost constant pain and fatigue, I'm overwhelmed and really frustrated. I've been dealing with this for over 20 years. It's really only been bad for the last 5 years (the pain I should say). The fatigue has been with me since day one.
I can totally relate to feeling (and being) beaten down by Rheumatologists who don't have a good grasp of this complex disease. I was fed up last year and managed to get a new Dr. This guy is actually human and has a clue! He cares and seems to know his stuff. He is suggesting that I either have Enthesitis (serious) or possibly even Ankylosing Spondylitis (damn I hope not). I'm waiting to go in for an MRI, he says that's the best way to diagose my situation. That and the cortizone shots he's given me..
I'm struggling to keep my head up lately. The pain and fatigue have me feeling quite low. I'm glad to hear you have a good Dr. now. That's what keeps me going...
I hope things get better for you Grumpycat ... and everyone else suffering right now.
No, not personal choice. People who are immunocompromised should never consume unpasteurized products. Botulism is no joke. This is included in the patient education for dmards and biologics.
TaraLynn said:
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.
The MEDS compromise the immune system, not PsA itself (that just makes you feel crappy). I take Remicade and MTX, and both suppress the immune response which is how they treat the PsA. If you don’t take these types of meds eat all the unpasteurized food you want to!
On the subject of diet, supplements, and home therapies:
Please understand that I KNOW everyone is trying to help in the best way they know. As a long timer, I have TRIED everything along with my rx drugs. I am on a special diet for IBS and it is an anti inflammatory diet and is also gluten free and I took out dairy on my own (It’s called FODMAPS if anyone wants to look it up). It works wonderfully for my ibs symptoms. I have been on it for years. In fact, I used this diet before PsA. I have taken every supplement, herbal, and tried tons of PT and exercise. For the average person these don’t work (except pt and exercise, of course!) and they didn’t work for me. It (for me personally) is frustrating to see these as suggestions when I have a complex illness. I do know everyone is trying to help, but if does feel minimizing. I understand that isn’t the intent, but that is how it feels. This week alone, I have a chest X-ray because my labs came back positive for tb, and a Doppler because one of my legs is twice the size of the other one, and will probably have another rheum appointment. Under these circumstances dietary changes feel belittling.
Also, diet and supplements instead of medical treatment tend to be a very hot button issue with PsA anyway.
Ok, so I tried to explain it as gently as possible. I don’t want to hurt ANYONE or send anyone fleeing from the page. I’m not as grumpy as my name suggests.
strugglingmusician said:
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?
That seems VERY potent. I would not be comfortable using it unless it was a more consistent dose. One has no way of knowing how potent one plan is compared to the next. Plus, I take antidepressant and anti hypertensives, which are the two no-nos on the warnings list. However, if I ever were to get cancer, I’ll be in like flint.
strugglingmusician said:
It’s all good…that’s exactly it, we are all trying to help. I truly have a belief that we can turn anything around in our bodies through diet and nutrition and although it will not give immediate relief for a flare up, I believe it could prevent future flare ups.
Thanks, Bella. I love the “chasing rainbows” it’s much more elegant than my “herding cats”!
bella said:
Hello Grumpy Cat,
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.
I don’t understand what happened? I read the thread, but don’t know why you are upset. I hope I didn’t do anything.
Gelita said:
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.
That’s why I’m sticking with the Savella. Maybe it will help. I just want something to work at this point and I trust my doc. If he thinks its worth a shot, I’m all over it.
Gelita said:
I take Savella and Lyrica. I was told by my drs. that Savella was designed for Fibromyalgia and that it is an antidepressant. Maybe your dr. saw you crying and thought that many PsA patients also develop Fibro hence the Savella. It helps me inmensely, but it took 3 months to start working.
The two drugs–Lyrica and Savella help my neuropathic pains as well. I need them both to do their trick, and they do!
Wishing you relief and health. I know what you are going through.
Im sorry...I can totally see your point. I had no way of knowing that you are probably more of an expert in the field of nutrition than the actual "experts" themselves (let alone me). How long have you been dealing with PsA?
Let me throw out 1 more thing and just take it for what it is because it has had a very calming effect on me.
There is a sound frequency of 528Hz that some claim has a healing effect on the body.
If you youtube 528Hz there are many videos that pop up.
GrumpyCat said:
The MEDS compromise the immune system, not PsA itself (that just makes you feel crappy). I take Remicade and MTX, and both suppress the immune response which is how they treat the PsA. If you don't take these types of meds eat all the unpasteurized food you want to!
On the subject of diet, supplements, and home therapies:
Please understand that I KNOW everyone is trying to help in the best way they know. As a long timer, I have TRIED everything along with my rx drugs. I am on a special diet for IBS and it is an anti inflammatory diet and is also gluten free and I took out dairy on my own (It's called FODMAPS if anyone wants to look it up). It works wonderfully for my ibs symptoms. I have been on it for years. In fact, I used this diet before PsA. I have taken every supplement, herbal, and tried tons of PT and exercise. For the average person these don't work (except pt and exercise, of course!) and they didn't work for me. It (for me personally) is frustrating to see these as suggestions when I have a complex illness. I do know everyone is trying to help, but if does feel minimizing. I understand that isn't the intent, but that is how it feels. This week alone, I have a chest X-ray because my labs came back positive for tb, and a Doppler because one of my legs is twice the size of the other one, and will probably have another rheum appointment. Under these circumstances dietary changes feel belittling.
Also, diet and supplements instead of medical treatment tend to be a very hot button issue with PsA anyway.
Ok, so I tried to explain it as gently as possible. I don't want to hurt ANYONE or send anyone fleeing from the page. I'm not as grumpy as my name suggests.
strugglingmusician said:
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?
Please keep us poste and be firm on Monday. (I know you can be) There are so many ressons for that elevated ANA thst are auto-immune realted. I'm hoping its not related to your remicade. As you know ANA is Measure of antibodies. That is main reason for remicade failure ( and why it is used with MTX)
Hi Grumpy. I am so sorry that you are having such a hard time now. You are in my thoughts and my prayers that things improve for you. I know I'm not here very often right now because my schedule is crazy insane but I do think about you guys and am so sorry when I log on to see someone like you suffering so much. Keep your positive attitude, you have always given me such great support and advice and I want you to think those same things about yourself. Take care sweet girl.
Im sorry...I can totally see your point. I had no way of knowing that you are probably more of an expert in the field of nutrition than the actual "experts" themselves (let alone me). How long have you been dealing with PsA?
Let me throw out 1 more thing and just take it for what it is because it has had a very calming effect on me.
There is a sound frequency of 528Hz that some claim has a healing effect on the body.
If you youtube 528Hz there are many videos that pop up.
Thanks I totally understand! Hope today is a better day for you grumpycat! I am not posting as much and will be stepping back a bit here as I’m finding using my phone only is very frustrating. Hard to respond to post’s with this little screen. Will be purchasing a lap top soon! Take care
Hey, Grumpy Cat hang in there. Being a nurse and having a chronic disease and chronic pain SUCKS! I am very pleased to hear from you although not so pleased you are suffering so much. I am excited for your new job. I miss working with patients so much my heart aches but, for now it is not possible. With a high ANA ( I think TNTLamb said it as well) you may have built up antibodies to the Remicade. I know there is some new research regarding Remicade and Chrones but not sure if it affects us. I will look into it. If you have found a good Dr. I would be very direct with him/her and lay it out, all of it. They are paid well to help people. Their are other reasons for a high ANA so get then to check it all out. Let me know how you are and what you find out. Hugs ( gentle ones)
Grumpy Cat - talk to your new Rheumy! Don't be afraid - give him a chance. If it doesn't work then I agree with Chris, go find a new doctor. I too was where you are, just 8 months ago. I was a mess. Finally got on meds that are working for me. I know you specifically stated no naturopathy so I'll respect that, but know that there are good ones out there who may be able to help so please don't discount it. In the meantime if you are feeling up to it and can just get outside for a walk to clear your head, to it. Go to a park and just sit on a bench and enjoy the surroundings. I try to combat my depression and frustrations with exercise so if you are capable... Have you tried yoga? Good for the mind, body and soul. :) All the best and know you are not alone!
A friend of mine has an elevated ANA - Gaylee thanks for that info I'll tell her about the Lupus connection. I think she may be hoping it isn't so...
More likely for PsA is Sjorens. So many of the symptoms are the same: Gooky /dry eyes, hand, fatigue, dry mouth etc etc that it gets over looked.
Jen in NJ said:
Grumpy Cat - talk to your new Rheumy! Don't be afraid - give him a chance. If it doesn't work then I agree with Chris, go find a new doctor. I too was where you are, just 8 months ago. I was a mess. Finally got on meds that are working for me. I know you specifically stated no naturopathy so I'll respect that, but know that there are good ones out there who may be able to help so please don't discount it. In the meantime if you are feeling up to it and can just get outside for a walk to clear your head, to it. Go to a park and just sit on a bench and enjoy the surroundings. I try to combat my depression and frustrations with exercise so if you are capable... Have you tried yoga? Good for the mind, body and soul. :) All the best and know you are not alone!
A friend of mine has an elevated ANA - Gaylee thanks for that info I'll tell her about the Lupus connection. I think she may be hoping it isn't so...
I totally understand! Hope today is a better day for you grumpycat! I am not posting as much and will be stepping back a bit here as I’m finding using my phone only is very frustrating. Hard to respond to post’s with this little screen. Will be purchasing a lap top soon! Take care 