Chronic Pain members - Welcome, please introduce yourself

My name is Sandy
I have chronic pain from Crohns and RA. I’m waiting to start Remicade in on the 21. I’m taking Tylenol and Prednisone at this time. My PC doc will no longer prescribe pain meds because she doesn’t believe in them. I’m waiting for appointment with a Pain clinic. I’m so tired of hurting.

Hey there @kathleenega, welcome to Connect. I'm glad you're here, too! Sorry to hear about your health struggles. Nothing worse than not being able to catch a restful nights sleep to be able to help restore the brain and body, especially if you still work. I've been where you are and it is really difficult. Retraining the brain into a new sleep pattern takes time, but with repetition and building new or different sleep habits, it can be possible.

One aspect which helped me was to begin developing a structured bedtime routine so my mind and body got used to consistency. Good sleep hygiene habits like omitting certain foods and drink by a certain time, reducing blue light from devices or TV 1 -2 hours before bed, reading a light hearted book or doing a mindless puzzle, taking a hot bath no more 2-3 hours before bed to allow for body temp to cool down, keep stress reduced by not watching the news or talking to stressful people before bed, have a cool, comfortable, dark sleep space, trying white noise like nature sounds or a fan... I could go on, but don't want to bore you!

In what ways, if any, have you tried to apply change to your routine or bedtime habits?

I also got Fibromyalgia in 2021, after Covid. I'm afraid to try meds but the painful flares are getting to be too much. Did you ever take Gabapentin alone and, if so, did that help reduce your pain? Did you start at the 900mg dose or work your way up? I also have chronic insomnia and wonder if the Gabapentin helps you sleep? I'd prefer to avoid Cymbalta for many reasons. I tried a gluten free diet for 5 months and didn't notice any improvement. Thank you.

Hi! So sorry to hear about your similar experience! My neurologist first diagnosed me with “post-viral syndrome “, so he prescribed Cymbalta first. After about a year my PC sent me to a physical medicine Dr. who suspected fibromyalgia, so she then added the gabapentin. I began with just one 300mg, and soon progressed to 600. My primary care bumped me up to 900. If I have a flare, I can increase my dosage.
I have had absolutely no side effects from the gabapentin ( unless I increase it for a flare and then it can add to fatigue).
Another thing that helps reduce pain is using Tens 7000 several times a day. You can order them online and your PT can set them for you. If you are not familiar with them, they are simply external electrodes that may work to relax tension in muscles.
I wish you some pain relief!
Sandra

Hello Rachel! I did establish a night time routine that helped immensely. I shower at night and read before I go to sleep. It also helps lighten my morning routine before I go to work. And I usually have no trouble falling asleep. It’s getting that deep restorative sleep that I can’t get to. I dream a lot. I wake up unrefreshed and yawning. It’s crazy and frustrating. I feel that if I can unlock this deep sleep puzzle, lots of my other fibro symptoms would be lessened.

Oh a jacuzzi tub would be so nice! I have a tub but it is too low so I take a warm shower every night before bed. It helps. Still doesn’t get me to the deep sleep zone though.

Hi @jimhd ! I did have a sleep study, have mild apnea but got a CPAP machine anyway. Tried it for a while, got a facial infection then stopped. I’m back on it now and am hoping for better outcomes this time around. Cross your fingers!

Hi, I’m Catharine. I have a lot of issues. They have seniors Centers here but nothing for people with disabilities (yet). I’m glad to find an online group for people facing these challenges

I don't think there's any problem with taking Miralax as prescribed. It is certainly nothing like antifreeze, a deadly poison if ingested.

YOur comment led me to believe you are comparing Miralax to antifreeze. I don't think that's a good comparison.

Hi, thank you for adding me to this group and inviting us to introduce ourselves. I have severe end-stage osteoarthritis in my hips, arthritis in my lower back and now arthritis between my pelvic bones. Also, I’ve dealt with lipelymphedema (which means both Lipedema and lymphedema). In addition, I’ve been obese all my life. I’ve lost 203 lbs now, with Bariatric surgery and drugs along with all the behavioral aspects of the Bariatric diet. And/ or the idea of as much variety as possible. After a Bariatric revision, I often vomit with many foods so I’m just doing what I can at this point. Now, I appear obese but eat so little that my husband and home health providers are concerned that even with multivitamins, I’m becoming malnourished. So, I have to “make weight “ to be eligible for hip replacement but I’m losing muscle mass as I become more distressed around my stupid bmi. So, fat tissue for Lipedema traps protein and water into impermeable cells, from what I know so far. That makes it very heavy where obesity fat is light. I have incredibly painful arthritis constantly, and a lot of skin pain, and now health care access stress so lots of things wake me up at night. I’m lucky to be able to have a chance if I can get to a properly acceptable BMI, so I don’t know how people with other kinds of chronic pain who have no dreams of ameliorating the conditions… I think if pain got so unmanageable, mental health issues would blanket me. However, we all need hope and space and time. I can’t walk anymore and I’ve had a lot of times of crying with pain. Not even crying from any frustration- just pure physical reactionary tears. Like on crutches in the wind trying to transfer into the car, for example. Anyway, I think a Mayo support group to talk through issues of pain as we try to navigate the most difficult things is a very good idea. 🙂