What do ya'll do to keep the pain to a minimum???
Is there any medication that has seemed to REALLY work for you?
Do you exercise? What kind??
What types of food do you eat?? Do you believe that helps???
Oils? Lotions???? I've purchased many DoTerra products -- haven't used them religiously but that is of course because the pain never seems to end..
It always increased during the middle - stressful time of the week.... Any recommendations??
Would massages help? Physical therapy??
AH :'((((
I have psoriatic arthritis and sjogren's. I have used tropical with some success, but have really relied on medication, exercise and physical therapy. I wind up developing joint weakness and laxity as a major cause of pain, and pt can do wonders. I've done it for all of my big joints and continue some home exercises.
I use massage and aqu therapy and it seems to help yoga helps me to. I try and keep my diet healthy not to many processed foods and lots of fruits and veggies. I prepare for the week by laying out clothes and planning meals ahead of time. Try and set a side a few minutes when you first get home from work to relax and regroup.
I have a heating pad on my couch and bed, and use Icy Hot, and other times Lidoderm patches. But, I also take prescription pain medicine and muscle relaxers as I have other issues as well. I take plaquenil but don't think it works all that much. Yoga helps as well.
I take prescription painkillers but find exercises the best pain relief when I have pain in a particular part of my body that is worse than usual.
I just wrote kind of a long post on another thread about this. I forgot about the Lidoderm patches! I really like those! Salon Pas (OTC) is fairly good....but of course, Lidoderm is better. Salon Pas is good in a pinch....but don't over dose on them, it will make you sick.
I also watch my diet and go to massage at times.
I often sleep with a heating pad on my tummy...find it relaxing and oddly it helps a little with muscle aches.
I'm newly on Baclofen for my Trigeminal Neuralgia and it helps a bit with body aches. Same with Robaxin.
I make my own compounded cream using: 1) Aspercream and 2) OrthoNesic Pain Relieving Gel (can get it easily on line) Works great for mild to moderate pain.
I have heard from folks with arthritis of a med called something like Diclofenac/Flector that this is a wonderfrul cream (best) or patch (ok) for bad arthritis. However, there are restrictions to it's usage.
I've had good luck with a compounding pharmacist for my trigeminal facial neuralgia. It's expensive though...but good if you have bad side effects to other drugs or nothing else is working.
Would like to hear more about Yoga. Do you think yoga would mess with my facial nerve pain????
I take one Super Bio-Curcumin 400mg capsule daily (naturalhealthyconcepts.com) and have pretty much ELIMINATED SUGAR from my diet. I have experienced tremendous improvement. NOT being awakened by pain is heavenly. I did a lot of research re: Tumeric capsules before this. Good luck!
My husband takes Glucosamin for body aches and it helps. I can't take it regularly because I have low platelets. I have taken it now and then and it does sometimes help.
I tried the Curcumin tables before and really upset my stomach. I have Reflux. FirstMuv or anyone...did you have to build up to your dosage? I'm sorry that I missed the previous discussion on this.
I too have stopped sugar (and also gluten/flour products) and I believe it has helped. Thank GOODNESS!
I have to chime in and also praise the benefit of Lidoderm patches for when you can’t even move because of excruciating pain. One time I was in the shower and almost fell down from the pain and my husband had to practically carry me out and slap 5 patches to my back (thank God he was home).
I also believe that massage helps me so much. I joined Massage Envy, and it’s the least expensive way to have regular massages.
Taking a long hot bath in a soaking tub helps me as well.
Unfortunately all of these are temporary fixes and doesn’t relieve the pain for a long period of time, that’s why my doctor prescribes me pain medicine. And honestly that sometimes doesn’t help sometimes either.
Try and hang in there.
Hi again. I just went directly from trying hunks of the tumeric tuber (from a Chinese market) in green smoothies (YUK!) to the 400 mg Capsules, the ones I mentioned above from naturalhealthyconcepts.com. I take it before going to sleep and feel no problems with upset stomach. In the morning I take a 40 mg Omerprazole capsule before anything else for gerd.
Swootie829, sounds like you have some chronic fatigue …another symptom. You might check out the Sjogren’s Foundation website where there are info sheets on each sympton. Those really helped me, especially with thrush and canker sores. Also, their Sjogren’s Book with chapters by expert doctors is outstanding. Hang in there. I know this disease can be overwhelming. This is a good place to get support. Keep in mind that we all are a little different regarding what works for us.
Many hugs.
Good questions and good discussion. I don’t seem to have many things that work. I have increased my use of ginger tea and have gone back to krill oil. I use lidoderm but they are expensive so I am about to buy salon pas which has had good reviews. I haven’t seen great results from anything.
These questions have brought up good ideas. Thanks for starting this discussion.
RE: LIDODERM PATCHES and COST....if your insurance company does not cover them, and you have a smart phone you can download this app GoodRX app or google this http://www.goodrx.com/lidocaine. It gives you discounts....instead of paying $300 for 30 patches, I pay just over $100 for 30 patches at my local CVS, but you can chose from many other pharmacies. It also other medications.
I do not take any medication for pain,,,,, I personally think moving has helped me I have always walked no matter what , I exercise regulary and by that I do strength training,,,, on a machine at home, for 20 minutes per day on a low level I walk at least 20 to 30 minutes 6x per week unless I am sick physically of course , but I mean power walking and if I can:t power walk I go for a slow walk,,, do not eat what the sun does not grow, Except 2 fish and one meat meal per week I use voltarin gel which is a anti inflam and always rub it in my ankles before I walk, and when I get sore to other parts of my body
I like to drink fruit juices a lot and still do this, as I find though with my mouth dryness does not seem to be a major factor anymore,, during the day...... only at night it really gets to me, If I get stressed I do breathing excercises, or my strength training on a machine, but keep it at the lower level, and after 20 years I still have pain a lot, and I mean a lot but I have a high threshold of pain,,,, Having a massage is great too,
I use Diclofinac. In NZ it is sold as Voltarin. You can get it as a rub in gel, and in different strengh tablets. Be wary of tablet form though as it can upset tummy.
Nomad said:
I just wrote kind of a long post on another thread about this. I forgot about the Lidoderm patches! I really like those! Salon Pas (OTC) is fairly good....but of course, Lidoderm is better. Salon Pas is good in a pinch....but don't over dose on them, it will make you sick.
I also watch my diet and go to massage at times.
I often sleep with a heating pad on my tummy...find it relaxing and oddly it helps a little with muscle aches.
I'm newly on Baclofen for my Trigeminal Neuralgia and it helps a bit with body aches. Same with Robaxin.
I make my own compounded cream using: 1) Aspercream and 2) OrthoNesic Pain Relieving Gel (can get it easily on line) Works great for mild to moderate pain.
I have heard from folks with arthritis of a med called something like Diclofenac/Flector that this is a wonderfrul cream (best) or patch (ok) for bad arthritis. However, there are restrictions to it's usage.
I've had good luck with a compounding pharmacist for my trigeminal facial neuralgia. It's expensive though...but good if you have bad side effects to other drugs or nothing else is working.
Would like to hear more about Yoga. Do you think yoga would mess with my facial nerve pain????
I have heard fabulous things about that gel! My doctor gave me the patch and it didn't work as well and came with lots of warnings. Fortunately ??? my meds for the facial neuralgia are mostly calming body aches.
I'm so confused. Never tested positive for anything like ANA sjogrens antibodies, do have arthritis, hip replacements, in constant pain CAN ALL THIS REALLY BE SJOGREN"S --the pain? dry mouth and eyes for 30 years.
Please tell me if this can all be sjogren's?
exjbnz...what type of machine do you have at home?
I have facial nerve pain and haven't been able to exercise. I pray I can do some light walking soon and am interested in strength training.
I totally believe in diet...has helped me with the autoimmune issues.
Sometimes I think all the fruit and veggies I'm eating are helping me with dryness.
Sabra
sorry didn't see your post - lost in amongst a pain discussion, - your confusion is understandable and common as Sjogrens is a sod to pin down.
The so called SS tests are not Sjogrens specific and are not very accurate and around 50% of SS sufferers are negative.
The newer SJO test from IMMCO is slightly better at around 85% accuracy but still that leaves many not diagnosed (including me!)
Your symptoms suggest that you may have SS and the only way to get better advice would be to have a schirmers eye test which measures tear production and a salivary flow test. A good medic should then be able to diagnose SS clinically even if you are sero negative.
It is possibe and not uncommon to get joint pain and muscle and tendon and bone pains with SS.
The joint damage may be linked or may be osteo arthritis ( I suspect much so called osteo srtritis is also an auto immune disease BUT THAT"S MY CONTROVERSIAL OPINION not yet accepted mainstream)
l hope that helps your confusion - read my profile for more info
sabra said:
I'm so confused. Never tested positive for anything like ANA sjogrens antibodies, do have arthritis, hip replacements, in constant pain CAN ALL THIS REALLY BE SJOGREN"S --the pain? dry mouth and eyes for 30 years.
Please tell me if this can all be sjogren's?
I am similar. I can usually get by with Aleve if its really bad. Moving helps in the long run. It can be hard to keep consistent with the changes in energy but I can tell the difference when I am keeping active. Whether its walk/runs or yoga type stretching, the more the better. And with the move and eating a lot of take out, I found diet makes a very big impact. I will say that there are times when nothing works but if I stick to my routines those times don't occur as much.