I was diagnosed last year after experiencing pain in my hips and fingers. My rheumatologist put me on methotrexate for 3 months, which turned me into a zombie and did not help at all, then I was put on humira for another 3 months, I was allergic to it and had no positive results to outweigh my allergy, I am now on remicade. I have received my first 2 injections but haven’t felt any better yet. Being only 20 years old, this has put a huge damper on my life. I can barely work, I had to stop going to school, and I can’t do any activity a “normal” 20 year old would be able to. My life has taken a complete turn around, and not for the better.
I am mostly wondering about your pain management. I have been open to everything holistic, which helps ease my pain but I still need more support. Essential oils, grounding, baths, tea, not pushing myself but not allowing myself to become stiff due to inactivity, dietary restrictions… Nearly every one of my joints has been taken over by this disease and most of my tendons have been compromised too. I am in a lot of pain around the clock and I must say I have a high pain tolerance now because of this. If you guys could share some of your techniques I would greatly appreciate it. I have done some research on CBD products, but I don’t know what is right to get, or if it will even help me that much. Any input is appreciated as I am trying to get out of this year long slump.
Hello sstjohn, sorry you are having to deal with this so young. It is a life altering thing. Pain management to me is a crucial part of quality of life. Whatever biologic you find works can take some time to alter your immune system response. Every day nsaids like meloxicam are useful. Sometimes prednisone is useful as well. It is important to bring up your pain issues with a doctor who can either make referrals for you to a pain management clinic or to address the issue for you directly. The pain part of PSA can be hard to get control of in my personal experience. Whether you are dealing from damage from the disease or dealing with pain from active parts of the disease or some other issue is hard to sort out.
Sarah, welcome to this community and welcome to “The Gap”. Most of us have been where you are now for at least three months. (That would be the average time for the first treatment to start working, if you are lucky enough to have the first bullet hit the target.) The Gap is not a good place to get stuck.
Have a look through our Complementary Therapies section, there’s a lot of really good stuff there. But please remember that the best pain control comes from having your disease in remission. If your rheum doesn’t seem to be able to pull that one off, you need to find someone else who will try. There are various rheumatologists around the country who are specialists in this wretched disease, and please be prepared to invest in a move like that if your current rheumie isn’t finding the treatment sweet spot that allows you to have your life back.
Good luck with the Remicade, and hope you find some comfort between now and remission.
@sstjohn Hey! So sorry you’re dealing with this! The good news is that with the right rheumatologist you can get some relief and hopefully get to remission. I had pain around a 7 (on a scale of 1-10) before I was diagnosed and treated. So far the many dmards and biologics I have been on have taken the pain down to a 3 or 4, just by controlling the disease. It’s still too much pain for me so we’ve switched to another biologic. I don’t handle nsaids well (stomach) or opiates at all (stomach+withdrawal issues) and I prefer not to start steroids until I absolutely need them. For now I get some relief from reflexology foot massage, acupuncture, and Chinese herb plasters. I have tried sublingual CBD but didn’t find a formula that gives me relief. Cannibis is not well regulated so it’s tough to know what you’re using and how much of it. I know it can work for some people so it might be worth talking to a cannibis doctor. The complimentary therapies section is definitely good to browse through, but for me finding the right rheumatologist has been the most important step in getting some relief from pain.
What can you do, movement-wise? You are obviously aware that inactivity is a no-no so just wondering what kind of exercise, PT etc. you are able to do and whether you might be able to increase or add to that.
It can be complicated. I can mess my body up just writing a letter sometimes, yet other days I do really push it physically and reap the rewards. A year isn’t long enough to become an expert on how to handle yourself to minimise pain, but you will be. Don’t reign yourself in too much … you need the high that movement gives and there’s got to be something that will deliver.
I just recently started concentrated CDB oil (no THC)/ I think I am pretty immune to the placebo effect, but I think taking it several times a day does help some burisitis in one shoulder that gets bad when the enthisitis gets worse. It doesn’t make the shoulder stop hurting, but a shot of CDB before bed lets me sleep some what better with the shoulder.
Pain med wise, my doc writes me three 5 mg Oxy HCL a day (non time release). It is not enough to kill the pain, I don’t think that is possible. But, one is enough to take the edge off so I can function at work, Two help more but I am pretty strict about not loading up on them. I can’t take NSAIDS which I feel like would help.
If you start pain meds start out as low as possible. Enlist someone else to help you honestly keep track of how much you are taking. Knowing people that got in trouble with pain meds they kept creeping up on the dosage until it was out of control.
I ask doc for oxy because if I take hydrocodone more than about three days I have problems stopping it. The oxy doesn’t seem to do that to me. I live in Tennessee and the opioid police situation here is bad. Politicians making a big deal out of all the “opioid deaths” without highlighting the fact that 99.9% of these deaths are not from pain pills.
In Tennessee after major surgery you can only get pain pills for three days, after that, tuff sh$T, Fortunately, PSA is on an exempt list so I can by…for now…from the opioid police.
"Just start slow and only take enough to make things a little better.
tamac — I’m wondering why you aren’t taking a time release pain med? granted, I’m not a medical professional, but it seems to me taking extended release twice a day with additional meds for break through pain would give you better control – the old saying about taking the medication whether you need it or not to stay on top of the pain.
In this state I would have to be in pain management to get oxycontin. That would be too easy because it makes too much sense. If I don’t get relief from the next biologic I’ll have to got that route.
Oxycontin is too politically incorrect. “That’s the hard stuff!!”
I enjoy reading all the posts and would like to start on cbd oil without the thc …I am on hydrococodone for my pain and had to sign a pain contract …would the cbd oil show up on a urine screen ? My niece says it helps her pain and she can walk easier she is taking the oil without the cbd in it ? thank you so much and I love all your posts
My understanding is that the tiny amount of THC that is in the oil accumulates in the body and will show up. Someone like @tntlamb will know. I would tell your doctor and ask. I plan on telling mine next month.
Depends… The only definitive studies done have been with smoking a bowl. The half- life of it for an infrequent user is 1.3 days and for frequent users 5-13 days After smoking a bowl containing 16-34 mg of THC, THC is detectable in plasma for 2-7 days. A clinical study carried out among 52 volunteers showed that was detectable in serum from 3.5 to 74.3 hours. Initial concentration was between 14-49 ng/mL This was considerably less than the THC-COOH detection time of 25 days in a single regular user. In event even if the CBD oils did build up, it’s in the liver where about 60% is pooped, 30% is peed and the rest goes to fat hair and sweat. It doesn’t ever make it back into the blood stream but will flunk you on a drug screen depending on the method. Depends on the oil most CBD being sold comes from hemp. The benefit if anyvcomes from the canniboids. hemp doesn’t have any ( or few) THC is only one of 411 in regular old pot if ijested and over 1000 if smoked
I was going to PT in August last year after I landed in Urgent Care because of the muscles around my neck becoming inflamed, unfortunately my insurance only allows 20 visits a year so I got cut off long before I was ready. My therapist, however, did give me home exercises and taught me how to do it all at home, even down to the massage part, so I do that. Those exercises are only for my neck, shoulders, and upper core though so it doesn’t help with the rest of my body. My therapist also thought it was best for me to save my 20 appointments in case I do run into a bad flare up again, or for the end of the year which ever one comes first, so I haven’t been there since December. As far as the rest of my body goes, I do a variety of light activities and stretches to exercise those joints and muscles as much as possible. I especially try to keep myself moving and stretching if I wake up super stiff, along with a nice hot shower.
I’ve done quite a bit of research on CBD these past few days. I have known about this websitebuylegalmeds.com for a while and finally decided to give it a shot. From my understanding, CBD will not ever show up in a drug test because it is perfectly legal, the THC is the one that you are tested for. I just ordered some daytime syrup from that website and for each product it tells you what the components are. The company is very transparent with their product and they are really good at answering questions about their product too. I figured I might as well give it a shot. I will update you all when I receive and try it. The reviews for the daytime syrup had the most amount of people saying that it helped a lot with their pain, the rest of the product mostly had reviews on anxiety.
Wow - I teared up reading this, it could have been written by me 17 years ago. What a journey since then. I was diagnosed at 25. Couldn’t work or do any “normal” 25 year old stuff. All of my joints were affected, and it progressed REALLY quickly. Metho made me sick, Humira put me in the hospital (infection) and the first year was just a mess. No way to sugar coat it.
Since your post is specific to pain management and I think I can be helpful I will stick to that, but feel free to reach out if you want to talk about anything else.
Now for pain management, I have one word: acupuncture. To be clear I am not (necessarily) suggesting you stop meds or anything like that, I am talking about acupuncture as a complementary therapy for pain management and mood. It made such a difference in my life that I ended going to acupuncture school when I was feeling better (about 6 months of regular treatment in my case but it differs). I now have a grad degree in acupuncture and I am a licensed acupuncturist who has treated well over 10,000 people for a wide variety of illnesses, including many cases of PsA over the last 10 years.
Quick note: it is important that you only see a licensed acupuncturist. Do NOT go to an MD who does acupuncture or a chiropractor who does acu unless they ALSO have the L. Ac license. The level of training is not in any way comparable. If you are comfortable telling me where you live I would be happy to refer someone; if not that’s cool but I really strongly suggest you give acupuncture a try.
As for CBD, it does not work for everyone (nothing does as you have already learned) but I trust the brand HempPLUS. This is what we carry in our clinics. It is not cheap. In my experience the 15mg soft gels are most effective. I have to regularly take it for 3 or 4 doses before I notice a change in pain symptoms, less is needed for mood.
I have a lot of other ideas, but this is getting long and I’ll wait to hear if this is even useful before going into it. Funny enough I literally just wrote a blog post entitled, “Our 10 favorite Alternate Therapies for PsA.” It’s a brief overview of each one; I am working on follow ups that will go into more detail.
Just remember that you are not going through this alone.
Robbie
CBD will not show up on a drug test. It has no psychoactive properties. It is equivalent to taking a vitamin. Even when the CBD is derived from hemp (which it should be, there are many other benefits to hemp-derived) you can take it immediately before a drug test and it will not show up. The drug test does not look for CBD as it is legal and it is not psychoactive.