Feeling at my wits end with Chronic Pain and Fibromyalgia
Usually I am not one to share much of my personal story but here goes...I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing...I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.
Interested in more discussions like this? Go to the Fibromyalgia Support Group.
@edda Good morning. I just read your post. I empathize with you and also relate. I think a vicious cycle is occurring in my life too. I am in pain and have difficulty getting around, because I really don't know, but I do. This makes me avoid activities and even family gathering. In turn the depression comes in which stimulates our pain button and here we are. I also take percocet and get frightened. I also was an addiction counselor for 28 years and certainly know the perils of opiate and of course other drug use. At the same time I am tired of pain and the percocet helps so much, except for the foot pain. They only take the edge off the foot. I have osteoarthritis and several back issues and when that attacks me they wil do the job of relieving the pain. I take them as prescribed and so be it I think a suggestion for both of us right now is to get away from the depression. I take an antidepressant (obviously not working well), but in spite of pain I need to get back into water therapy, which is so available to me. I am also going back into grief counseling (lost my husband 18 months ago) and TRY to socialize a bit. Al sounds good, right. Now to do it. If the opiods help to down size your pain and make it a little easier to get about and you are taking them as directed I would not put all my focus on being a drug addict. Many drugs that people abuse are the same ones that keep people walking. God bless
@edda Hi I also am in a lot of pain with fibro,back fractures and other issues . My Dr. told me to take Vicodin as prescribed that if I do this I wont become addicted . Its the people who don't follow the orders and take more that are the addicts. I was on Vicodin along time them he took me of it as I was taken less then prescribed. This is when he switched me to Tramadol which I had been taking also and I only take one now. Yes don't be afraid to take the pain medicine as long as you take according to directions.
@jmweissler, Good morning. I just reread your post and want to thank you for including the medical document which requires a second or even third reading. When I concentrated on the elements of your advice, I felt that this was a "cut to the chase", "net it out" approach to treatment solutions. You gave kudos to medical cannabis. I have chosen not to use pain medications and only use medical cannabis. My pain is manageable most of the time and my zest for finding out what tomorrow will bring is present most of the time.
Would you be comfortable sharing your medical cannabis journey of discovery, experimentation, and acceptance? That would be helpful to many members who are curious or just plain ready to try it and are seeking information. It is not like just picking up a new RX.
My other inquiry is about your exercise program. There is a great video on the internet with a dog and its owner doing the same poses. Is your body able to handle very gentle yoga stretches? Do you use props of any kind? Do you check your spine alignment?
May you grab some joy today. Chris
Hi Jen, I so understand. I have Adesive Arachnoiditis lumbar spine, scar tissue stuck to nerves, leg pain, neuropathy rt. toes, Flat Back syndrome, spine does not curve anymore do to a horrible Laminectomy 2008. I can't leave the house except to drs. Due to my flat back sitting is so painful. Life has left me.
I was taking hydromorphone since 2015. I'm immuned now. P. M. DR. is making me feel it's my fault that the medication doesn't work anymore. I left a message asking dr. if I could go back to the Hydromorphone but a very high dose? I never any side effects. I had a little surgery Pelvic/ NO Pain from it. on 9/9 -9/10 hospital was so concerned about my pain they gave me a morphine drip. For long ride home I was given oxycodone 5mg. I guess morphine drip was still in my system it was stopped day I was leaving. Ride home noted. P.M. Oxymorphone 10 mg. NOTHING!!!!!!!!!!!!!!!!! His office is closed on fri. I called left a message, new med not work and please get me out of the house, socialize, get dressed. I feel for you so much! Have you ever thought of a Pain Pump? I have it, it helped me so much until I became immuned to the Hydromorpohne. I also have a difficult time eating. I guess it's the pain, depression. For me, mentally like, DOOMED.
It's just my husband and I. My four legged loving, caring children.He is so tired and stressed out as I. Standing! Why, Why,In my experience is there not one person in the medical community who truly cares? I called 2 good practices in Neurology gave my diag. never called back. they never do! I don't call back anymore.
I wanted to reply to you Jen I guess I didn't?
four walls closing in more and more
Sincerely
Yes please, I too would like to hear your cannibus journey @jmweissler. Chris, I'm really racking my brain here. Hydrocodone does not help my pain enough and I've been on an opioid for 2 years. I'm opening the door to more supplements being added, keep my body moving as best I can, find the joy in each day as best I can, am going to try PEA cream (I think). I'm dedicating to regenerating, if possible, my nerves instead of masking pain. However, it will be a long while at this rate before I drop pain pills as they give me benefit and some relief, just not enough. My IV lidocaine infusions are simply not working on my legs as I hoped. They are debilitating. Heat and a tight wrap works best. My doseage of lidocaine will be upped Monday again then only one more increase before I'm maxed out. Met with neurologist this week to discuss overall game plan. Im incredibly frustrated as my pain is relentless and persistent. I was a very active and involved woman and over the past 3 years my life has sloooowed down (via multiple diagnosis) and now is trying its best to come to a screaching halt. I heed all of the advice from everyone on this forum but at the end of the day it's about what my body allows and doesn't allow me to do. Another big component for me personally are finances. I have been on disability for 2 years and am going on Medicare soon. I need to find proper supplemental isurance to cover the possibility of future treatments that are in my neurologist's wheel house. Including IVIG and plasmapherisis. Truth is I don't know if I'm coming or going. Always lived week to week before my disability now we are really drowning. Not looking for sympathy, I only bring this up because so many of the pain treatments people suggest are out of pocket. It's tough when the pocket is empty. It's a shame that it's cheaper for me to spend $4 per month through my insurance on hydro, and put opiods in my system, verses a natural product that insurance will not cover. As far as cannibus...I DO NOT wish to go through life high however, I DO want pain relief. Ughh, frustrating.
Having chronic pain and finding the right tools to combat the pain, never mind finding a doctor who can and will work with us--this is very hard work, takes much trial and error, and keeping current with anything new on the scene. For me the formula includes very light yoga stretches, CBD gel pills, tylenol, and 120 mg. of Cymbalta. Also as clean a diet as possible as I experience more pain and inflammation from food additives. Weekly acupuncture at a PACO community clinic have saved my life, twice even three times a week if I am in a flare up. (Most major cities have 1 or 2 such clinics which offer low cost treatments and also do exchanges of free treatment for volunteer hours spent at the reception desk. Here in Tucson, the treatments are $15!) I have been on opiods, have been through all the pain treatment centers expensive options, and none of that helped. After years of searching for "help," today I accept my limitations, and I have developed a new attitude, which has probably been the biggest breakthrough. Extremes of temperature, rapidly changing barometer, kick my butt, so here in Tucson I have finally this summer accepted that I cannot go outside after 8:00 a.m., and certainly cannot drive. I have been devoting myself to some on line research and writing that I had always told myself I would do in retirement, and have chosen to enjoy that. I have finally ( I think!) finished grieving the loss of a strong healthy body that took me dancing, hiking, backpacking, jogging, playing softball, trekking in Nepal, and so forth. That grief and it's companion denial kept me in a spin of trying new treatments that I wanted to believe would give me back my previous vitality. Those years are over. They were good years. I believe my health struggles are evidence that like many women, I am a "sensitive", a person who does feel empathy deeply, and also is a canary in the coal mine, one who is the first to get sick because of social and environmental toxins that others seem to handle better for longer before they "get sick." I am no longer embarrassed or ashamed about my limitations: rather, I choose to focus on what I can still do, share honestly with family and friends about my condition and my journey, and in general have a much better quality of life right now than I have had in many years. It is a long journey, and each of us has their own story, and both good days and bad, no matter how much progress we make. As Langston Hughes once wrote, "life ain't no crystal staircase" for any of us, despite whatever our culture, social media, our "pursuit of happiness" constitutional right has led us to believe. My heart goes out to you all and my congratulations on choosing to seek help and stay the course. Keep on truckin', as we used to say!
Thanks for your words Peggy. Appreciated.
Rachel
@rwinney Hi I too have a lot of pain from 2 fractures in my back fibromyalgia my nerves are burning from back area Dr. wants to put cement in I wont do that . I have some tools that are cheap that you may consider . Hot showers ,Epsom salts bath in it in tub or just a washcloth, Vinegar works as well, Epsom salt rub by Procure it is great . Dr. Teal,s E.S. for showers . Ice when edema , Tens unit for tight muscles,my chiropractor told me about this, Light exercise. Of course I do pain meds . Brace for my back. Just some suggestions
I also have severe fibromyalgia and osteoarthritis plus Sjogrens syndrome. My orthopedic ordered an MRI to check for bone cancer as my mother died of it. It showed arthritis in every joint. It's even attacking my new artificial hip. He then checked me for fibromyalgia and I responded to all the trigger sites. He said it was the worse case he had ever seen! I am taking medical marijuana- CBD with a .2mg of THC. I buy them separately and sometimes don't add the THC. I buy from a reputable firm and it has really helped. Last Jan. I had Gamma surgery for a meningioma and when the helmet was removed the headache and nausea was awful. The nurse had me take 1mg of CBD (they had told me to take it with me) and it got rid of the nausea almost immediately and the headache in about 30 minutes. I have COPD (never smoked), asthma, and AFIB. My pulmonologist told me to take the CBD to relax me when I had the gamma laser surgery as he was concerned about the type of drugs they were going to give me. The CBD really helped to relax me and it helps with the pain.. If you decide to buy it make sure the firm is reputable. Rely on the CBD consultants to help you decide on the dosage. In FL you have to go the a marijuana approved Dr. and then he/she will notify the State that you have the qualifying diseases and then you pay the State for your license. I am not happy with the marijuana Dr. as he gave me a list of things that I should take. He listed vaping (never with COPD), and 20mg of THC. I take .2 mg. BIG difference. The consultant said 20mg was way too high. He told me to take more CBD and a little THC. Their motto " Start low and go slow". Also my husband has really bad neuropathy from diabetes. He has started taking .4 mg of CBD and he can now sleep without pain in his legs. I hope this helps. Good luck.
So sweet of you, thank you for your suggestions. I am taking that path and the warm bath gives relief for a decent amount of time. Also checking out essential oils. I have used Dr. Teals Epsom salts for foot soak when I had Chilblains and will get more. Really trying to balance my light exercise with rest and trying to give my own myofacial release with massage. I wish you well. Thanks again.
~Rachel