A woman I know recommended a doctor that works with nutrition and acupuncture. Has anybody tried acupuncture and how did it work for you?
After this weekend, I am willing to try almost anything. As fast as I put food in,, it comes out. I also pasted out Saturday night. My husband came home and found me on the floor.
Also my entire thigh is black and blue and I think it's from the Humira.
I'm sorry you're having such a rough time. I've gotten bruising from the Enbrel injections, but only occasionally and certainly not so extensively.
Here's the thing. You can certainly use nutrition and acupuncture to support yourself. But it won't slow down disease progress. It may lower inflammation, in the sense that some foods are more inflammatory than others, but this also seems to depend on the sensitivity of the person.
I've used acupuncture for back pain, headaches, and PMS. Truthfully, I had the greatest response for PMS, and only a slight response for pain and headaches. Other people seem to swear by it. It's one of those things that can't hurt to try it.
As to the stomach issues, this is definitely something you need to talk to your doctor about.
How long have you been taking Humira for and how long have you been sick at your stomach for?
Also, any time that you lose consciousness, you want to check in with your primary care provider. It sounds like you may have something more serious going on.
3 months on Humira and stomach/colon issues for a year. I saw the doctor about the dizziness and they narrowed it down to low blood pressure and massive drops in it but they have no idea why
GrumpyCat said:
How long have you been taking Humira for and how long have you been sickat your stomach for?
I am so sorry that you aren’t feeling well. I had a lot of GI issues too. Thankfully, with diet changes they have resolved. It can really be the pits.
If you have been sick, you could be dehydrated. That could definitely be contributing to low BP. Are they sending you to a cardiologist?
My GP did an EKG and that came out fine. I try to drink a lot. I wouldn't say I've been sick. I just have major colon issues that has food going straight through.
GrumpyCat said:
I am so sorry that you aren't feeling well. I had a lot of GI issues too. Thankfully, with diet changes they have resolved. It can really be the pits.
If you have been sick, you could be dehydrated. That could definitely be contributing to low BP. Are they sending you to a cardiologist?
Have they tried Pentasa or even sulfazine for the GI inflammation? Some diet change certainly seem in order. Not diet "to treat" thats wacko stuff but to mitigate symptoms...... Grumpy has that figured out, might save some experimenting.
As far as the passing out, it doesn't sound like low BP to me. not if your husband is finding you after some period of time. (heart either) It needs some follow up for sure.
I was only out for a minute or 2 but still out of it and unable to safely get up. He gave me a cold cloth and some chips (for the salt) and that helped. I am still foggy brained though and need to be careful when standing. I will discuss it will my GP at my next appointment and if it happens again I will call - my daughter won't let me not.
I have tried experimenting with my diet but it doesn't seem to make any difference. I wonder if my lack of nutrition is causing the problem but not sure how to fix that.
Have you had recent labs done? Might be something in there to point to a cause. My gastro put me on the FODMAPS diet after a gamut of testing came back normal. It has really helped. It’s been very hard, but helpful.
You can not "experiment" with your diet and expect results, this is not an internet fix it thing or something an alternative practice, a naturpath or book seller comes up with. Enteropathic arthritis is on one of the major Spondyloarthropathies. AS, Reiters and PsA being the others. They all overlap (sometimes a very little, sometimes a very lot.
Enteropathic arthritis needs treated. Chrons disease is the extereme version but all of Spondyloarthropathies overlap. Humira helps but usually requires a DMARD backup SSZ is the usual suspect. Just as daily exercise is critical to success with PsA your diet is critical and needs supervised by an IBDexpert. It takes a LONG time to get it where it needs to be
I have had more lab tests than I can count. I am told there are things that are borderline but nothing that should cause my issues. The only thing they found were ANA and vit. D that were major.
When I say experiment, what I mean that with my GI doctor we tried removing things that could aggravate my insides. This was done over the last year and it makes no difference. I seem to cycle as to what sets me off.
This doctor was recommended by someone I trust and does more than acupuncture. He also works with nutrition and other forms of Chinese medicine.
I just don't know what else to do and I am tired of just medicating everything and then taking more for the side effects
So sorry this is still going on Robyn. Does prednisone provide a short term fix for your GI symptoms? If so is it worth a 3 week course to get your nutritional status back up and see whether it gives Humira the nudge it needs? As Lamb points out, there’s SSZ which is supposed to be good for colon focused issues, as well as the straight IBD treatments (5-ASA, Pentasa etc).
The only diet I had that stabilized symptoms (ie I wasn’t in as much pain or as uncomfortable), but didn’t address the problems (so I still wasn’t absorbing much), was steamed white fish and rice - no salt, pepper, not even a squeeze of lemon juice - for two weeks.
In the end though, avoiding certain foods is mostly symptom control for me - its the meds that seem to sort out absorption of nutrients etc.
Apologies, I got really off-topic, I haven’t tried acupuncture, good luck if you decide to.
I am on lizness for the IBS, not sure if that is what you mean. The prednisone only helped the leg pain, which is under control. I play musical foods when I notice 1 is being exceptionally difficult. If I just stayed off it, I'd have nothing left to eat. I was told to add salt though or my pressure drops to low.
It it totally rediculous
Jen said:
So sorry this is still going on Robyn. Does prednisone provide a short term fix for your GI symptoms? If so is it worth a 3 week course to get your nutritional status back up and see whether it gives Humira the nudge it needs? As Lamb points out, there's SSZ which is supposed to be good for colon focused issues, as well as the straight IBD treatments (5-ASA, Pentasa etc).
The only diet I had that stabilized symptoms (ie I wasn't in as much pain or as uncomfortable), but didn't address the problems (so I still wasn't absorbing much), was steamed white fish and rice - no salt, pepper, not even a squeeze of lemon juice - for two weeks.
In the end though, avoiding certain foods is mostly symptom control for me - its the meds that seem to sort out absorption of nutrients etc.
nothing to apologies needed
Jen said:
Apologies, I got really off-topic, I haven't tried acupuncture, good luck if you decide to.
I'm sorry Robyn I just spit coffee on my screen. All I could think is your LINZESS is working really well too well. You might want to make a phone call. LINZESS is for treating constipation. I can't imagine taking a laxitive/nsaid combo for diarrhea. Either its an over-site or the nobody is paying attention.
the problem is, without it I don't go at all and I get so backed up I can't get any food in. We are playing with the dosage of it and miralax trying to get me to go at a reasonable rate. I seem to be all or nothing
Sorry about making you spill your coffee
Hi Robyn, if prednisone doesn’t alleviate it, and you are having the types of issues you describe, then I guess its not as likely to be inflammatory and you are seeing a motility specialist?
I gather there is some research on IBS and nerves so I suppose maybe they’ve tried you on some of those alternative treatments (I’m not familiar with them - but I think there’s some that act on the nervous system are also used for depression, and some for epilepsy perhaps?)
Anyway, a good GI I’m sure will resolve it better, let us know if you try acupuncture and how it goes.
I am seeing a mobility specialist but there is only 1 in this area so it's a very slow process. A scan did show colon swelling and bleeding