Over the past 30 years the best help for fibro for ME was cortisone shots and pills. BUT… that also caused osteoporosis, so i have to be careful and not lift heavy things or fall. The past two years MRI’s indicate spinal stenosis in the low back (lumbar). Its pretty easy for me to distinguish between the fibro pain and the stenosis and docs have tried many meds including morphine. nothing helps. I cannot have surgery to create some spinal space because as the Ortho said “your bones wont hold a pin, wire or any stabilizer -and the surgery itself could make your spine crumble”. So any ideas for pain relief would be appreciated. I do not regret the cortisone because it allowed me to have a job, family, trips, etc. Am paying for it now !
Hi, Carolyn.
I am so sorry to hear about your back pain and the deterioration of your spine. I’m sure it was scary to hear those words from your orthopedic doctor. I’m so sorry that the pain meds aren’t helping!
My own pain in back will vary from day to day. I also have spinel stenosis, sciatica, 4 fused discs in neck (2 surgeries with plate and rods), many epidural and nerve block injections… Just doing my best to keep going, as you have done all these years. The problems in my hands, shoulders and feet are also quite painful. The combination of medications that my doctor has me on does still help. Have you asked your doctor what else they can do for you to help with the pain? Perhaps some therapies for your back? Other than ice or heat, I’m not sure what a person could do. Have you ever tried a TENS unit? Maybe others on the site will have ideas for you. Please hang in there and let us know how you are doing. Saying prayers and sending hugs your way! 
Hi, Carolyn, I’m so sorry to read you are not getting any/enough relief for your many pain sources. Sadly, I can completely understand and sympathize with you because I could have written much of what you wrote. I have all the physical issues you mentioned. I get the c. shots occasionally, but refused morphine, so my drs have pretty much stopped suggesting anything except the shots, Voltaren gel, muscle relaxers (for spasms) or tylenol. I started doing Tai Chi a few years ago and that helps tremendously, especially on days when I can barely move. I find massages give me lots of relief and improved mobility, even though they do not get rid of the pain. I just feel a whole lot better after one. They’re expensive here (everywhere?), so I only get them occasionally and not now with covid. I’m getting one as soon as I can after I get my 2nd covid vaccine! Acupuncture also gave me relief, but practioners kept leaving, etc., so I do not go anymore. I hope you can find some ways to feel better. I really believe we have to keep looking for what works for us, individually. It feels like we have to keep reinventing the wheel of pain relief! All the best.
Hi Carolyn
I too suffer a lot with back pain on really bad days, I hit the hot tub 3 times a day.
I can not take any NSAIDs
My routine is to take CBD oil with Indica oil for calming me down.
I get cream made up at the pharmacy Ketamine 5% with Lidocaine 5% on the bad areas.
New drugs include; Naltrexone pill with Nabilone pill
I hope you some relief; I know how you feel
Hi Carolyn
I am so sorry to hear that you are suffering so much. I thought for almost 30 years that my severe lower back and hip pain, as well as a shooting pain down my leg, were the result of my fibromyalgia. I saw an orthopedic doctor in Spring 2020, who took tests and told me I have bad osteoporosis. He also said the pain in my hip is caused by my “bone on bone” hip joint - which I need to have replaced. I will be pursuing that soon, now that I have received my covid vaccines.
On the topic of bone loss, I’m not sure what to do about it. Several doctors have suggested I take Boniva or Reclast. I refuse to take either of these, because I have seen so much data on the side effect of causing your jawbone to actually die. Several dentists have confirmed this happens to some who take these medications. Have your doctors suggested any treatment for your osterporosis, besides taking these meds? Best wishes for a better week ahead!
AussieMom - i have a TENS but am seeing primary doc in April and going to ask for a new one. this is 8 years old & not working right. My pain doc wants to insert a TENS into my spine so it can work 24/7. When I said ortho told me my bones will not tolerate surgery, pain doc turned around, walked out and slammed the door. i now see only his PA for my Norco. The government “opiod crisis” stopped my primary from giving me Norco. So i have the extra expense of the pain doc for exactly the same amount of meds. Sunshine, please follow your instinct on the Boniva and Reclast. I have a friend used Reclast and insurance would not pay until her flesh was destroyed and nurse could visually see her teeth. She now has oral cancer. Please follow your instinct. WHITEY - move over, there are about 100 of us that will rent a bus and come to use your hot tub !! I am so glad it helps you.
My other thing to share is attitutude. In the mornings, I hurt at an 8 or 9 and pray to simply be able to feed my cat and get dressed. But in the back of my mind, i know that light exercise, food, focusing on a project…by afternoon i am down to a 6 and by bedtime, i feel about a 4. Thank you all for your ideas. I appreciate anything - especially prayers.
just checking in… am declining but i have birdfeeders that i have to walk to every day. I did get a new TENS unit and that does help. i live in a senior duplex complex, and we only have ONE door. so i have to walk about 3 blocks to get behind my apt. and 3 blocks back. But i concentrate on the birds, and at least that keeps me moving. My family is all gone except for my youngest daughter 2 hours away … She encourages me to “think and talk about things other than pain” She loves me, but doesn’t understand… just like i dont really understand what is causing her Migraines. I usually put an ice pack on my low back while i have coffee and Norco. some mornings I think i cant make it through the day but then I remember no one else is going to fill the birdfeeders. I cannot soak in a hot tub because i would never get up. I have had to use a shower chair for 10 years. I do know that this is a great place to get support – i am doing a little better with the fibro and much worse with the spinal stenosis. Doc wrote me a RX for a walker with a seat, so must get that so i dont fall. A cane isnt enough anymore. I did not know until recently why Governor Abbott of Texas is in a wheelchair. he was 26 and jogging when a large tree limb cracked off, fell onto him and he’s been paralyzed waist down ever since. I cried when I read that and thought how selfish I have been about pain. I can still walk and drive. Just wanted to share that with someone. I TRY to look at what I can still do, but its hard. To all of you who have written above, I hope and pray that today has some ray of sunshine and joy for you even if its for a very short time.
I have spinal stenosis,degenerative disc disease.,and slipped herniated discs . Diagnosed years ago. The back pain is unbearable and the neuralgia in my legs and feet is horrific. No exaggeration. Hard to walk and of course my fatigue is a problem. I cannot get help from Dr.s. I’m invisible. Thank goodness my family gets it. Tried different meds but didn’t work. The things that worked cannot be prescribed I was diagnosed with fibromyalgia as well and have lots of those symptoms too. Im told the nerves being pinched in my lower back is causing the neuropathy. This all adds to depression and anxiety and a feeling of just despair. Lots of stress is not helping.
Any suggestions would be appreciated.
Michelle - I totally understand your feeling of despair. I am struggling with accepting that I just am not going to get well. Here are some thoughts: I have had to move from using a cane to using a walker. the cane allowed the legs and feet to be more painful and numb. Bending over a bit with the walker is helping. I USED to have 4 hours a week of household help that Medicaid paid for. The worker got $10 an hour. I no longer qualify, so I called the company and if I pay for it myself, its $45 per hour and I am required to have at least 20 hours per week of help. Well, there is NO WAY I can afford that. I did find a young woman working for an acquaintance, $15 per hour. But after the 4 hours, when I went to get my suppertime med (narcotic) half of the bottle was gone. I had to call the sheriff. She was arrested and let go as they did not find the meds on her. If you could qualify for Medicaid, you could get someone to do household chores occasionally – I get very depressed when I cant keep my housework done. I am working on a family geneology which gets my mind off the pain. Do you have any sort of hobby? putting a large puzzle together or watching YouTube concerts? I just cannot bear the thought of being put in a nursing home, so am trying everything to be able to stay at home. And i agree most docs just run us through like cattle at an auction. The doc i like best, who listened to me, has retired.
Hi carolyn
How are you getting on using a walker instead of a cane. I change to a walker from using a walkingstick (cane) a couple of years back because using a walkingstick made my arms so painful. Also I was walking lopsided. My walker has a seat attached to it as well, which makes life so much easier when I can just sit when I feel the need to. What do you do to help painful numb feet as I suffer from painful numb feet?
I do hope you can get household help from somewhere so you will not have to struggle on your own. Do you have a friend who could give you a hand. I have help once a week from a Carer, which I pay for out of my Disability Living Allowance with shopping or helping me with household chores as well as cooking a few meals for me otherwise I would not be able to manage.
It’s been a long time since i have been here. We finally got to take our trip to Florida - it was supposed to be 2 years ago for graduation. I did
take the walker along, but have not been using it here at home. I just have to use a cane at home.