Chronic Pain members - Welcome, please introduce yourself

@bwendland It took me awhile to realize onions were a problem because I rarely ate raw onions but one evening we went for burgers, I had onion on mine, and within a very short amount of time I had a roaring migraine. The migraines caused by those things never lasted as long as the pre-menstrual (and at time of ovulation too) did. I think I had raw onion another time after that and it was my proof.
JK

@virtuous69 Hi. We have similar issues. Don't feel bad about not doing much. I have Fibromyalgia, depression, rheumatoid arthritis, Sjogren's Syndrome, Spinal Stenosis, three bulging discs (two in lower back, one in neck), IBS and now Lupus. Some days you can do more then others. I find extreme heat really bothers me, changes in the weather and extreme cold (I guess I should move to Hawaii?! LOL). It has been very hard to accept that I can no longer do many of the things I used to do. But I have found out how to pace myself, so I can get a few things done. Another thing I found is that movement is oil and sitting still too long is glue. For me, water exercise helps a bunch or just walking in a mall or cool area. I have my "lost" days where I literally sleep about 18 hours! But then I get myself up and start trying to get a few things done. If you aren't careful, you can get in a vicious cycle - you feel bad so you don't move, you gain weight and it is harder to move, you now feel even worse so you don't move. I have found that I MUST move. I can only allow myself so much "down" time. But don't overdo it - like don't go out jogging or bowling or something. Just straighten up around the house, walk as much as you can, do stretches, etc. I also find warm jetted bathes to be helpful. And I love my Temperpedic bed (I do not work for them or anything ). It truly has made a difference for me not being so achy and getting better sleep. I know how much you ache. I know how depressing it can be. But you are your own best advocate. Talk to your doctor(s), look into massages or other therapies, try to eat healthy and try to keep moving. And stop negative self talk! It only makes you feel worse. Think on what you can do and not on what you can not do. You will be in my prayers. Best of luck to you. (I do not get on this site much as I still work part time and I care for my mother to has Alzheimer's and Chron's - she lives with me.)

Great advice @blindeyepug! I really like your description of movement is oil and sitting still too long is glue - fits me to a T. Exercise really helps even if it's a struggle doing it. I do 30 minutes on my recumbent exercise bike most every morning as soon as I get up out of bed just to get my day started and I only have polymyalgia rheumatica and small fiber peripheral neuropathy, plus a failing back with a little bit of osteopenia.

Wishing for a pain free day for all my PN and other Connect friends who are hurting.

John

@blindeyepug You are so right on the moving. My almost daily pool exercises are essential and despite the fact that I hate, hate, hate going I am glad afterwards and have far more energy than when I don't go. I am so fortunate to have a beautiful club not far from me (about 20 minutes away) because up here in NH there are not too many like it.
I generally steer clear of hot tubs due to being on immunosuppressants and regular walking is hard on my knees which are both problematic. I asked my surgeon about hot tubs, telling him I only use the one at the club when I have been in the pool for about an hour and no one has been in there. He basically would not say NO, he said he would leave it to my discretion. Well today, I got out of the pool and my legs were killing me. I hadn't seen anyone in the hot tub while I was there so I was happily on my way over to it and I saw the sign "hot tub closed"! What a disappointment.
JK

Hi, My name is Cheryl. This is my first time logging on this site. Many times I have felt that I had nowhere to go and no one would understand. I am not even sure I am in the right group. I do suffer from constant pain, but have difficulty pinning down where the pain is coming from or which hurts the most. I was diagnosed with Epstein Barr when I was in my middle 20's and don't know if that is part of my problem or not. Exhausted all the time, trouble sleeping due to pain in my back, neck, feet, head...... I have been going to the Dr, but nothing seems to happen. Just tired.

Hello Cheryl (@clghanimo) - welcome to Connect. I'm sorry you are in such pain. You have come to a great place for finding answers from others with similar health issues.

I'm tagging other Connect members @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus (EBV), and I'm hoping they will be able to offer some more insight.

Also the Mayo Clinic website has some information on EBV: http://mayocl.in/2iYRh3v

Have you had any other tests done to help you determine if there are other issues causing your pain?

John

Hi, Cheryl. I am oldkarl. I do not know if you are in the right group or not, but anyone who enters must be in the right place. All of us have been through some version of your problem, so you must be in the proper place. Here, you well receive a lot of suggestions of where to look for answers, and it is up to you and your docs to decide which fork you want to try next. Remember, it is your life. So let me make a suggestion which might point you toward a rather rare disorder. I have been diagnosed with everything you mention, and many more things. But the one which seems to be most likely to come to the top is some form of Amyloidosis (see https://amyloidosis.org) It is a disorder of protein breaking up, and then making chains which form fibrils (tubes) which get between normal cells in any body tissue; bone, nerve, muscle, hair, GI, cardiac or whatever. One of the things it does is to get into the spinal column, then begin to press these tiny fibrils against and between the nerves, muscles and bones of the spine and cause horrendous pain or even light pain. I have this form, and it can be traced back about 125 years in my family, and according to genealogists, back to the Vikings from Finland and Iceland. There are about 15 in my family I know of, including several with dementia, Multiple Myeloma, Crohns, etc.. Anyway, it is not an easy diagnosis and may take years to DX. However, the place to start is with a serum Free Light Chain assay and Urine protein assay. If there is any protein that shows up, you have some sign of it. However, you may not have enough of a show to cause you any problem. But Medicare will pay for these tests. It is always best to work with experienced labs, such as Mayo, MassGen, Stanford, etc. You can have blood and biopsy samples sent to Mayo, Stanford, others for anylysisis. Actually don't have it, as only about 10 out of 1,000,000 get diagnosed each year. But it is always fatal, so it is best to treat it if you can. Educate yourself with amyloidosis.org, Mayo, Sloan-Kettering, Stanford, Cleveland Clinic, MD Anderson, etc. We will try to help you in any way we can.

@clghanimo

Welcome, Cheryl. We all share one thing, that being chronic pain, wherever it happens to be. Most of my pain is from peripheral neuropathy, with another type of pain in my brain, which predates the neuropathy pain. So, I follow a few other groups, mental health, neuropathy, depression and suicide. My prayer for you is that you'll find the cause of and treatment for your own pain.

Jim

Have you seen a Rheumatologist to see if you might have Fibromyalgia? the roving pain is typical with Fibro. You might also do some research on Central Sensitization as there is a link with Chronic Pain. We hear you!

Good morning ladies, I am new to this group, but see myself in all your posts. I have been dealing with Fibro for twenty years. Nine years ago I was diagnosed with breast cancer. I Had several surgeries along with six rounds of chemo. Presently, I have daily chronic pain -- lower back (if I overdo It) arthritis in both knees (the last six years I've been getting either steroid shots, or the sinvisc shots), neuropathy in both my feet (from chemo). My overall pain has gotten worst since chemo (I'm sure aging has also been a contributing factor too). Years ago I took between four - six Percocet a day. For almost two years now, I only take half a pill in the mornings. As most of you can imagine, dealing with all this starts to affect your emotional and mental wellbeing. I've seen counsellors at several different times. I do yoga and have been for at least 15 years now, I get massages every other week, and currently started acupuncture for my neuropathy (I feel fortunate to say -- it's working). I have been dealing with all this for so many years now, and I can honestly say I'm in a bad place emotionally right now. I take Ativan once a day to help wth anxiety stemming from all this. I am blessed to say I have a supportive husband in all this although I was never blessed with children. All my family member live far away. The friends I do have, I don't like to burden them too much with my situation. The fact is that my life very much has become "dealing with my health concerns with much resting in between". Not too many healthy people want to listen to your issues. It's a bad place to be. Thank you for listening.