I had scoliosis surgery & suffer from chronic back pain. I can't really say what helps my pain because even after two and a half years I don't think I've found that.. But I guess I would say family, because they are a distraction & very supportive. Having a rest now and then may help my pain decrease the slightest too.
Fibromyalgia (for real yo!) ;) Meditation Slow movements of my body to a cool song Education ing myself Being real (instead of in denial) Cooking a healthy meal and loving it Good family and friends who understands baths!
WOW, FlappsyLady, I have the same spinal issues as you and also the migraines. I wish I knew how to meditate well. It's hard for me to turn off my head, or rather, quiet my mind. I cry too, as I did yesterday. It's not great today, I thought it was just the weather patterns and cold but it seems I'm having a flare up and I'm having difficulty dealing with it. I'm very tired but haven't been able to get comfy enough to sleep through the pain. I know this will pass. The shame of the average person is that they don't get that when we have a flare up, when it's over there has been further damage or degeneration somewhere. I know I'll get through it. And since I have all of you wonderful people by my side.
Avoid extreme stress, relax, take suppliments like Turmeric to reduce swelling and pain. Eat healthy and I made a project of simplifying my environment. I worked in yoga for arthritis, walks around town and keeping in touch with friends.
RA is a life changing disease so the sooner one can begin to change their life the sooner you can get back to living it. It wasn't until I took an active role and stopped depending on doctors 100% did I start to see actual results.
It also seems to be a very lonely disease and everyone I've talked to (including myself) have lost friends, family, spouses and jobs. When my employer laughed at me and then fired me, I had to suck it up and move on and that is harder than living with the disease. It's also very hard to get a job when you obviously have a disability.
I have lupus the pain has gotten worse now my hands feet and nose stay purple. Hands and feet always tingle. I've done the diet now for 3 years only to hear im getting worse. The meds make me tired and sick. I've tried massage therapy chiropractor and still no relief. The pain is unbearable. The doctor says it's to be expected and will only get worse. Does anyone have any suggestions that might help with pain? I won't use narcotics and I've been on the all natural pain rubs and oils along with the antiinflammatories. I just want one day with no pain. How do I do it? Please help.
I have Ehlers Danlos Syndrome (hyper mobile type), Syringomyelia, Chiari Malformation, Dysautonomia, Hydrocephalus, and other related things.
For Dysautonomia/dizziness, increase salt intake and drink pedialyte.
EDS/chronic joint dislocations and sublaxations. My problem area is my right shoulder lost count how many times its dislocated. I use braces, immobilizing techniques, exercises to place joint back in socket, ICE PACKS, and slings. For other related joint and back pain from syrinx I use a mix of heat / ice and SalonPas pain patches (OTC, $8.99)
For high intracranial pressure headaches I drink copious amounts of caffeine (Mountain Dew works best), ice packs, upright in recliner, cold rag and Gatorade. Works for migraines and chiari related headaches as well.
I have Syrinx, Syringomyelia, Osteoarthritis, Fibromyalgia. As well as other medical problems. I take 50 MG patches of Fentonyl, 2 pills of Hydrocodn /Acetaminophen 325/7.5 every 6 hrs as needed for pain, Nerve pain meds. Savella 50 mg 2x day, Gabapentin 800 mg 4 x day. Every thing I take helps but I still have pain levels of 7-8, 8-9. I also have migraines the only thing I take any more is CQ 10 3 x day it seems to really help I haven't had a full blown migraine in about 6 months.
I have arthritis of the neck, mid and low back, knee, ankle. Tore rotator cuff Broken arm getting confirmed today. Depression, Anxiety disorder,
The thing that helps me the most is reading, and watching tv and playing word games. I also like the most of all using my tablet ( it goes with me everywhere). And I like computers. I also like to read about psychology. Things that have to deal with human tells, human body behavior and micro expressions. I do biofeedback. It is like a great pain reliever. It shows you how much control you can direct your mind and brain over the body. I think that is awesome. I use to like to lay on my right side with pillows everywhere for ultimate relief but I have a new condition that doesn't allow me to use my bed.
Needacureforlupus, I am sorry that you are going through such a hard time. Knowing that the pain you are in is only going to get worse is debilitating at best..... I have to say that I have Fibromyalgia, Degenerative Joint Disease, Degenerative Disc Disease, Long Thoracic Nerve Palsy, Scoliosis, Cervical Spondalytic Myelopathy, RSD (Reflex Sympathetic Dystrophy), CRPS (Complex Regional Pain Syndrom), Spinal Spondylosis, Spinal Stenosis, Moderate to Severe Lordosis, Grave's Disease, TMJ, Costochondritis, among other things. All of which cause absolutely horrible pain. It causes me to have a pain level of 7.5-8.5/10 on an every day basis ON Morphine!!!! I have done and still continue to do the natural things such as accupuncture, accupressure, trigger point massage, trigger point injections, sympathetic Nerve Blocks, physical therapy, I eat clean, lots of dark green leafy veggies, among other veggies, Organic Herbs (home grown) such as Basil, Dill, Sage, Rosemary, Turmeric, Ginger, No Gluten, lean protein, Magnesium, Vitamin D, Vitamin B Complex, Glucosomines and Chondroitants, biofeedback, etc... I have also used Melatonin to try to relax for sleep. I'm sure I have left out some things. Unfortunately, I have become so much worse over the years and have had over 25 surgical procedures in the last 20 years that I have to use narcotics to be able to even function or I would be bed ridden with the pain. Turns out, now the doctors want me to go through a battery of tests to see if I have Lupus and/or MS. The entire thing has been a nightmare. I know you don't want to use pain killers and neither do I. I can't speak for everyone but for the most part, all of the posts I have read here show the same general concensus, that nobody WANTS to have to take and/or live on narcotic pain relievers. I wish you the very best of luck and hope that some of what i have given here is helpful.
Alwaysinpain I may have already mentioned this to you but in case I haven't, as long as they are considering other things that might explain all of your symptoms as a whole, have they screened you for Lyme? It may take more than a simple blood test but I think consulting a Lyme Lierate (as they call it) doctor might be a good idea for you. Don't get me wrong I'm not quick to think everything is Lyme the way some seem to but there is real validity in considering it when so many body systems are involved and you have so many of the things Lyme is often misdiagnosed as.
Rayjamrak I have had shoulder dislocate several times too and know not only how painful but how frustrating that can be! Sounds like you are taking quite a bit of caffeine for headache though and I wonder if there's a point when it stops helping and starts contributing though I don't know. Have you tried pure (important) peppermint essential oil for the headaches at all? It helps many with pain as well but certainly with many types of headache. Might be worth a try.
Wheezy im sure there are reasons or I'm reading it wrong but are you taking Hydrocodone/acetaminophen every day along with the patch? I ask because part of the goal with the fentanyl patch of course is to minimize the need for oral pain med and eliminate the acedomynaphan which is problamatic over long term. Maybe they should be looking at increasing your patch strength. I know I resisted and just used breakthrough meds at first too but when my doc explained the logic I agreed to up the patch dose and it did work better. I don't often need the breakthrough stuff anymore. Pain isn't all gone but it's all relative, I know you know how that goes. Anyway just a thought also maybe just the Hydrocodone or whatever without the acetaminophen at least. That way if you do need the acetaminophen you can just take that seperatley. I just hate to see more problems created down the line that could have been avoided. 😁😅
Lymie, I have been checked for Lyme's Disease every year for the past 20 years. I owned horses and was always out in the woods, in the barn or around the horses. It is a very easy way to have a deer tick land on you and cause a problem. I have never had a high titre reading. I have had the testing done every year since 2002 when I lost my horse because I still travel from time to time through the year up to Massachusetts to visit my best friend and hang around in the barn and groom her horses, etc.. The doctor is really feeling strongly, however, that I am dealing with Lupus. All I know is that when I go for my checkup this year, I am going to have him run the entire gammet of blood workup and check everything he possibly can. All I can do is pray.
That is the biggest problem with the current testing (it's actually a screening) for Lyme. A titere requires that your system is fighting the organisms and The Lyme spirochete is sneaky so if it's been around for a while in you it's likely hiding or changed form so the "test" comes back negative. It's one of the reasons people can go back and forth with pod and neg results but not the only one. Anyway it's why I would highly recommend you see a LLMD who can and will do a clinical evaluation and diagnosis if that's what they think and back that up with better focused testing and treatment trial. Especially considering all the treatment you have had, if it's a Lyme related issue you could be well past a posative titer. I'm not saying it's Lyme but I sure would take the next step in ruling it out.
Thanks for that information Lymie!! Can you tell me what some of those screenings and/or tests are that the LLMD would conduct?? I was really unaware that it could change. I have never received a positive test result thought when I was screened. My doctor, because of my chronic pain, wanted me to be checked annually because of always being out in the woods on horseback. I do know that there have been several people who have been misdiagnosed and have lived with Lyme's Disease for years unknowingly. Also, I recently heard something else that there have been folks that have had invisible shingles, all of the symptoms as well as the disease itself but with no rash. (Then when the people end up with chronic pain and post herpatic neuralgia, they don't know why). I guess the thing is that I am so damned tired of going back and forth to doctors I just don't want to keep dropping $40 here, $60 there, $125 somewhere else... Especially on a disability check, it just doesn't go that far. I'm also tired of sitting in the waiting room, going in to see a doctor that was recommended to me by my doctor and then to have him/her either not listen to me or just blow me off totally. So here I sit and think to myself..... Do I have Lupus? Do I have Lyme's. Do I have PHN?? Then at the same time telling myself, Oh, who cares, if I don't know about it, then I can't worry about it.. I have enough crap to worry about and I would rather log in and be able tohelp someone else get through their day a bit easier.