Advice on how to work full-time with fibromyalgia and CF

Posted by herbi13 @herbi13, 2 days ago

Hi everyone. I was diagnosed at Mayo 3? yrs ago. (Fibro cf, also have migraines, vestibular PPPD, and autoimmunes). Spent two of those years working PT after stepping back from my career. I found osteo based PT and acupuncture to be critical to my daily maintenance. I really felt FT work was not in the cards anymore. Suddenly I found an opportunity and moved to the twin cities for a FT job in my field. I have been there a year and have held on but it’s killing me. I have no life because the FT works takes absolutely everything. My HR has helped as much as they can. How can I ask for accommodations if every day is a new shuffle of symptoms or energy levels? I have new vestibular stuff going on and possibly trigeminal neuralgia. I want to know how the heck people work FT, and if any people living alone manage somehow with PT work? I just cant imagine how to pay rent on PT work and have seen how hard it is for others to get disability. I also have a friend who did get it and it has caused some unexpected problems with their family insurance coverage. Anyway, FT work with the chronics is the discussion point here. Also, I am committed so far to managing with no Rx meds other than some topicals for my autoimmunes.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

covidstinks2023 | @covidstinks2023 | 1 day ago

@herbi13, I am so sorry and I feel for you. Praying for you.

I have had Fibro for 31 years. I cannot take any of the meds for Fibro, with the exception of an occasional Flexeril (Prescription) and Tylenol.

I find rest helps, stretching first thing in the morning, hot showers, heat packs and a pain cream that I was prescribed from a Fibro/Arthritis/Spine specialist. It is a compounded cream, no narcotics in it, but, it certainly helps to take the edge off pain. It has Flexeril, Gabapentin, Lidocaine & Diclofenac (which is in Voltaren Gel). I have bilateral arthritis and also in my spine and neck. This cream has been a life saver.

I would call a Pain Clinic or a Neurologist as they both should be able to prescribe this cream and prescribing for you what is needed could be totally different than mine. Also, I get an occasional massage and she massages this cream into the places where I hurt the most.

Please make sure you are ergonomically correct in your posture if you sit at a computer all day as this will certainly add to you pain, stress and tension in your neck and shoulders.

In my area, Rheumatologists no longer want to treat Fibromyalgia nor will they take Medicare. With the insistance of my Endocrinologist, he said I needed some help and to look up a Fibromyalgia Pain Specialist and I did. The Pain Specialist I go to also gives trigger point injections to the spots where you hurt the most. That is what I am going to do next once I get over my present physical issue.

If you have not had your thyroid thoroughly checked, please do so. Thyroid Disease (Hashimotos) tends to go along with Fibromyalgia and it can cause pain as well if not treated.

God Bless You and you are in my thoughts and prayers.

herbi13 | @herbi13 | 1 day ago

Thank you for your years of wise advice. Salonpas patches are always within reach but they can burn my skin. They sure work nicely though. I have a creative job and little desk work. My vestibular PT and reg PT are both focusing on my neck right now. I am so grateful for what osteo PT has done for me. They treated whatever region was flaring when I showed up at my appts. I can only take tylenol and am becoming a tad bit more sensitive to that now too. Still trudging along trying to focus on mindful living. I will be discussing a neuro consult with my primary this Friday. We need a medical specialty punch card for a prize with 10 punches😄. Take care

duvaldena | @duvaldena | 1 day ago

I have fibro, EDS, chronic migraines and have struggled with keeping up FT since I had a medical emergency a few years ago. I’m currently doing intermittent FMLA b/c I need more recovery time. 2 days isn’t enough and pushing through on Fridays is keeping me in the cycle. I block off Friday afternoon and nap. It’s helping a lot. The biggest thing that helps is I work from home most days. My job kept the pandemic hybrid structure.

I manage my symptoms mostly holistically. Therapy, 1:1 Pilates, massages, and I basically have a Pilates studio at home (minus the big equipment) so I can work through pain on my mat. Also I have medical marijuana. I microdose and it’s helps my brain disconnect from my symptoms. Also the lotions are amazing.

Hope this helps! I feel you. I got to the point where I said we have to be real about what I can handle. I’m in my 40s and it will only get worse with my hormones changing. My hustle days are over and I’m perfectly ok with it.

herbi13 | @herbi13 | 23 hours ago

Pilate is great! It was pivotal in my recovery from a major surgery 20 yrs ago. I have a pilates for fibro video on youtube that is my go-to mat routine. I am 59, and totally understand your statement about being kept in the cycle by work. Thanks very much for your perspective!

ranpattiwagner | @ranpattiwagner | 12 hours ago

I'm 76 years old and have been diagnosed with Fibro and CFS for over 40 years. All I can say is keep moving, I take Tramadol when the pain gets really bad, I am also on Gabapentin at night.
My husband and I travel in our 5th wheel and ride our bikes. The moving part is very important! A positive attitude is also one of the most important reasons to have a full life with these diseases.