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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.
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Did your Botox injection help at all? With my chronic neck pain I had one doctor say it may help.
I am so glad you have a strong support system, especially your boss!
Best
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1 ReactionI have found Hydrocodone Acetaminophen 5-325 mg works well. I refrain from talking it as much as possible. I see an acupuncturist who helps a lot. I have seen him every month since 1997. The pain is constant. Pool exercise is another option.
Good luck
It helped with some muscle pain trigger points
How is your boss doing ?
Hope I can be of any help to you in your journey
Have you tried medical MJ for better sleep. Loss of sleep always results in pain levels going up for me.
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1 ReactionI’m in the same boat. I don’t want to be dependent on Oxycodone but it allows me a better quality of life. My doctors have tried everything as well. My current MRI shows arthritis, pinched nerves and slipped disks.
We are hoping that the MIS TLIF and removal of a synovial cyst will take away 1/2 of the pain 🫶🏻
Thank you for sharing. It’s good to share so we can take little bits of pain solutions from everyone on here. I understand the pain issues you have but not how you cope. We all have to find ways to cope as all our bodies are different. I have a new pain Dr here in Sydney, Australia. He’s the best Dr I’ve seen for many years. He talked to me face to face, typed stuff in I’d bought X-rays etc. Thr best thing was he listened, then repeated some of the things back. I couldn’t believe it I just burst into tears. He said you have a lot to cope with and we talked. He prescribed PEA meds google it. It has to be made at the compound chemist. I start ketamine infusion trial May 10 every 2 weeks until June. I have 4 different pain issues, he’s the 1st Dr to believe & understand me. Infusions will only treat my fibromyalgia, trigenimal Neuralgia & Neuropathy. It won’t help my back, neck and knees. Until 2 weeks ago I was only taking 60mg Cymbalta, Panadol 6 per day & medicinal cannabis. I was admitted to hospital for trigenimal neuralgia attack. I did not realise it progressively gets worse. They prescribed 100mg Tramadol 1 daily about 3pm with 30mg MS Contin for breakthrough pain. It’s a lot better, still a 6-7. Dr prescribed Zoplicone to help with sleep. I have a medicinal edible at 10pm. This is a new regime. I’m still waiting for my PEA. In between if I have pain I take Panadol. I don’t usually sleep until early hours of morning. I don’t find Zoplicone addictive either as I use it as a last resort. I rest during the day but don’t sleep. I try and do light housework broken up in 10min lots with 30min rests or longer. Whenever I rest I stretch especially in the morning. Do light weights 1kg each (rotary cuffs) doesn’t like it heavier. Before I had this last flare in October until now, I was walking 8-9000 steps at the beautiful park nearby. It’s peaceful, the lake has lots of different birds, turtles, eels, fish and geckos everywhere. Sometimes I read when I rest or research the net about how to help myself. It’s tough and it’s s day to day or hour to hour. You understand what I’m saying. have had pain for years and have found a regime that works for me. Lyrica & Gabapentin gave me brain fog, I couldn’t bathe or dress myself. My daughter had to care for me but it was hard as she worked night shift. I gave up big pharma drugs but I couldn’t cope. Until I received medicinal cannabis. Some of my pains seem to go through cycles. The past month is all about nerves only this time my TN had progressed. Other times it’s my rotator cuff tears, bicep tears, neck back knees etc. I’m just grateful I live with my children & grandson. They allow me to do what I want, if that’s laying in bed all day then they know I’m resting. My grandson is my heart, he was born with an old soul. At 2 he’s very advanced in sports & reading, spelling, he’s a problem solver, funny boy and very loving. That’s what keeps me going. Some days when I’m overwhelmed, I cry a river, get it all out. Then have a bath, put clean PJs on and have cannabis and my only tramadol and sometimes sleep 20 hours. The past 5yrs I’ve finally learnt to listen to the changes in my body. I would listen to my body but not update my changes. Take care
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2 Reactions@srdodla Hi there - thank you for reaching out. My apologies for a delayed response. I appreciate your kind words of support, and am happy you found this forum, too!
You've had a rough go from the sounds of it, I'm sorry for that. Thankfully you are still employed, but understandably it is becoming more difficult. I tried 6 months of temporary disability from my job in hopes of "fixing" my stuff and returning, but after attempting to go back for 2 weeks, but it was a fail and long term disability began. I agree about holding off on cervical or any surgery unless you know it is the absolute last option. The cycle of pain is not a fun one to be in.
Since my post that you replied to was written, a lot has changed. I graduated from Mayo Clinic's three-week Pain Rehabilitation Center. I saw it as my only choice to try and get a better hold on how to live with chronic pain and conditions. All the band-aide stuff like I previously listed (and you list above), stopped being effective and I sought a different way. It helped me tremendously and was the best thing I could have done for myself.
Here is a video that may be helpful for you. Dr. Sletten explains Central Sensitization Syndrome (CSS) and the cycle of chronic pain.
- https://www.youtube.com/watch?v=vJNhdnSK3WQ
Also, here is information about the Mayo Clinic Pain Rehabilitation Center that Dr. Sletten talks about in his video.
- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Finally, here is a link to contact Mayo if ever you chose to inquire about an appointment with any of their 3 campuses or the rehab center itself.
- http://mayocl.in/1mtmR63
Please meet @mitfit who also struggles with chronic pain and inquired about the Mayo Pain Rehabilitation Center. I hope that all who watch and learn from Dr. Sletten are inspired to advocate for themselves, and try to find a better way of living with chronic pain and symptoms.
Looking forward to your replies! Hope you find some inspiration and joy today!!
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3 Reactions@rwinney
Rachel
Thank you for your reply. I read about the Mayo program.
I would like to keep in touch with you on this journey and keep in touch with you
Warm regards
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1 ReactionIt’s so hard to get an appointment at Mayo, I’ve been denied twice.😩