M.E.

I’m struggling greatly from Fibro, ME/CFS/, Chronic Migraines, and the latest diagnosis of Vestibular Migraines. Vestibular symptoms are affecting my functioning greatly. I deal with almost constant dizziness/vertigo, blurred vision and nausea. I’m thinking about getting a cane to see if that will aid my balance but I’m only 45 and my legs still work, so I kind of feel silly about walking around with a cane. Others around where I live do see me outside of my apartment when I’m capable and I’m concerned I’ll get a lot of questioning/ disbelieving looks or comments given that I don’t look disabled or elderly. I’m also not sure if a cane would be useful for vestibular balance symptoms like it is for someone with a knee, ankle, hip or back problem? What do you all think?

#ChronicVestibularMigraine
#ME /CFS
#Fibromyalgia
#chronicmigraine

As some of you may know from my previous post, I am on a medical leave from my retail job due to a herniated disk in my lower back. I also suffer from several chronic illnesses (fibromyalgia, CFS, chronic migraines, endometriosis, interstitial cystitis, degenerative disc disease and numerous allergies and sensitivities) and I had a cervical fusion and a non-cancerous mass removed from my spine a few years ago that left me with nerve damage in certain areas. Due to the back injury my other conditions have spiraled out of control and I’m realizing that I may not have the ability to return to my retail job once my medical leave ends. So I have been researching other kinds of money making options and freelance work keeps popping up. I’ve been looking into Fiverr and Upwork and I’m wondering if any of you have any experience with it that you could share? Trying to figure out if it would be an effective way to earn some income. Any input would be appreciated!

#ME /cfs
#Fibromyalgia
#chronicmigraine
#InterstitialCystitis
#DegenerativeDiscDisease
#Nervedamage
#Endometriosis
#Allergies
#cervicalfusion
#ChronicIllness

I’m not sure how to keep going. I’ve been doing my best to live with fibromyalgia, CFS, chronic migraines, and many other accompanying issues since 2017. It all began with a car wreck in 2016 that led to a cervical fusion. Fast forward through many different treatments and surgical procedures and we get to 2022 when, after being a stay-at-home homeschooling parent to 4 kids, I finally made the choice to leave my narcissistic abusive husband and had to go to work in retail. My health was not good to begin with and working has just made me go even further down hill. But I’ve had no other choice but to keep trudging through. My two daughters (20 & 22) are both living with me due to their health problems and I have been doing my best to take charge of their care. They are both disabled from chronic physical illnesses and mental and developmental problems. We are currently waiting to see if they are going to be approved for disability benefits. Several months back I began experiencing severe vertigo and vision issues/disturbances along with worsening cognitive function, disorientation and total inability to focus or multitask. My doctor thinks I’m possibly having ocular and/or vestibular migraine symptoms. However, I’ve had to wait almost 2 months to be seen by my neurologist and have an appointment at the end of January. Unfortunately at the beginning of December I ended up in severe pain and couldn’t walk without help due to a suspected herniated disc in my lower back. I have been referred to a neurosurgeon and will be seen at the end of January. I have been put on a three month medical leave from my job and am trying to survive on the tiny bit of savings I have. The money isnt going to last for long. Due to the meds I was given for my back (multiple rounds of steroids, pain meds and muscle relaxers) I have had horrible reactions and coupled with the pain and difficulty getting around, I have been sent into what feels like a never ending CFS crash and my brain function and emotions are severely affected. The fatigue and fibro pain and autonomic symptoms are so awful I feel like I’m dying. I’m barely eating because I’m constantly nauseous and I’ve lost 10lbs since this began. I’m basically living in my bedroom and bright lights and loud sounds are quite intolerable. My doctor doesn’t have a lot of knowledge about my conditions but is extremely willing to help me in any way she can with referrals or medication that I am interested in trying, but otherwise I’m on my own. I don’t yet know if surgery will be necessary for my back, but I’m also questioning whether I’ll be able to go back to work at all when the medical leave ends. If I can’t, then I’m not sure how I’m going to pay my rent/bills and take care of my daughters. I have no idea if or when my girls will be approved for disability and even though I could apply also, the process can take so long that I’m afraid we would be homeless before I got approved. Just not sure what to do anymore and I’m barely functional which just worsens it all. #ME /CFS #Fibromyalgia #ChronicMigraines #AutismSpectrumDisorder #Dysautonomia #EhlersDanlosSyndrome #EosinophilicEsophagitis #UlcerativeColitis #MajorDepressiveDisorder #cognitivedysfunction #Endometriosis #InterstitialCystitis #HerniatedDisc #Vertigo

Recently, #MEaction asked their community how long it took to receive their diagnosis of myalgic encephalomyelitis (ME). From over 400 responses from across the globe, the average time from their sample of responses was over 8 years to get a diagnosis.

I’m sure this didn’t surprise anyone in our community. I remember the frustration I felt going from doctor to doctor to doctor. Then 5 years later, I finally got a diagnosis from a doctor whose wife also had #MECFS . A year later I also got a Fibromyalgia diagnosis from a different doctor. And, in 2021, I was diagnosed with an aggressive form of a rare cancer called neuroendocrine cancer. It’s been hard to deal with all three because the symptoms overlap.

How long did it take you to get a diagnosis?

#MillionsMissing 2024: Teach ME, Treat ME

Introduction:

As the clock ticks away the final moments of the year, many people eagerly anticipate the arrival of New Year's Eve festivities. However, for individuals living with CRPS (Complex Regional Pain Syndrome), the excitement of the occasion may be accompanied by concerns about managing symptoms and ensuring a comfortable and enjoyable celebration. In this comprehensive guide, we will explore practical and thoughtful strategies that someone with CRPS can employ to prepare for New Year's Eve.

Understanding CRPS:

Before diving into the preparation tips, it's crucial to have a basic understanding of CRPS. Complex Regional Pain Syndrome is a chronic condition characterized by severe, often burning pain, inflammation, and changes in skin color and temperature, typically affecting a limb. The exact cause of CRPS is not fully understood, making its management complex and individualized, but as most of us living with the condition know, stress and the unknown play a huge part in causing a flare.

1. Consultation with Healthcare Professionals:

If you think it is appropriate, begin your preparations by consulting with your healthcare team. Schedule an appointment with your primary care physician, pain specialist, or physical therapist to discuss your plans for New Year's Eve. Share your concerns and seek advice on managing symptoms during the festivities.

2. Medication Management:

Ensure that your medications are up-to-date and well-stocked. Discuss any adjustments with your healthcare provider, such as changes in dosage or timing to accommodate the late-night celebrations. It's also advisable to carry a small supply of pain medications with you in case of unexpected flare-ups.

3. Comfortable Attire:

Choose clothing that is not only stylish but also comfortable. By opting for loose-fitting and soft fabrics that won't irritate your skin or exacerbate CRPS symptoms. Consider the temperature of the venue and dress accordingly to prevent discomfort due to temperature sensitivity.

4. Footwear Considerations:

If CRPS affects your lower limbs, carefully choose footwear that provides support and comfort. Avoid high heels or shoes that may put additional strain on your affected limb. Orthopedic shoes or supportive inserts may be beneficial in ensuring stability and reducing pain.

5. Plan:

Familiarize yourself with the venue and plan your movements accordingly. Identify seating areas, restrooms, and quiet spaces where you can take breaks if needed. Inform your friends or family about your condition, so they can offer support and understanding throughout the celebration.

5. Hydration and Nutrition:

Staying hydrated and maintaining proper nutrition are essential for managing CRPS symptoms. Bring a water bottle to the celebration and make mindful food choices. Avoid excessive consumption of alcohol, as it can interfere with medications and potentially worsen symptoms.

7. Pacing Yourself:

Pace yourself throughout the evening to avoid overexertion. Listen to your body and take breaks when necessary. Engage in activities that bring you joy but be mindful of the potential impact on your pain levels. Balancing participation and rest can be the key to enjoying a celebration without triggering a flare-up.

8. Temperature Regulation:

CRPS often involves temperature sensitivity, so be prepared for various weather conditions. Dress in layers to easily adjust to changes in temperature. If you're celebrating outdoors, bring a blanket or shawl to stay warm, or use a cooling device if the environment is too hot.

Mindful Stress Management:

New Year's Eve can be emotionally charged, and stress can exacerbate CRPS symptoms. Incorporate stress-reducing activities into your preparation, such as deep breathing exercises, meditation, or listening to calming music. Inform your close friends or family members about your needs and ask for their support in managing stressors.

10. Accessibility Considerations:

Confirm that the venue is accessible and inquire about accommodations if needed. Some venues may offer seating options, ramps, or other accessibility features that can enhance your overall experience. Advocate for your needs and communicate with event organizers if necessary.

Conclusion:

By taking a thoughtful and proactive approach, individuals with CRPS can navigate New Year's Eve celebrations with greater comfort and enjoyment. Consultation with healthcare professionals, strategic planning, and open communication with friends and family are key elements in ensuring a positive experience. Remember that every individual's experience with CRPS is unique, so tailor these suggestions to align with your specific needs and preferences. With careful preparation and a supportive network, you can welcome the new year with a sense of joy and fulfilment despite the challenges posed by CRPS.

Lastly, on behalf of Billy and I, here is a pain free New Years Eve and a pain free 2024!

#bnightscrps #CRPS #crpsawareness #CRPSWarrior #crpslife #crpssupport #ChronicPain #Chronicpainwarrior #chronicpainlife #chronicpainawareness #chronicpainmanagement #chronicpainquotes #chronicpainsupport #ChronicIllness #chronicallyill #chronicillnessmemes #chronicillnessawareness #chronicillnesssupport #chronicillnessquotes #ChronicIllnesses #burningnights #burningnightscrps #burningnightscharity #bnightscrpscharity #burningnightscharityfundraiser #k9searchmedicaldetection #barkbag #wagthedog #ME