I was wondering if this condition can cause extreme back pain snd spasms? I am still learning about this condition and have many questions?
I was wondering if this condition can cause extreme back pain snd spasms? I am still learning about this condition and have many questions?
I’m only 17 but got diagnosed with 5° scoliosis (not bad enough to have anything done about it) about 3 years ago, since a year or two ago I had got back pain occasionally but nothing that lasted more than a day. However since the middle of August I’ve had terrible pain constantly in my back, hips and shoulders. I lose control of my arms and legs to the point they can be uncontrollably shaking for hours straight with no way of stopping it other than just waiting it out. I’ve been to A&E twice but have just been prescribed strong pain medication and told to wait for a possible MRI scan that may not even uncover anything. My mum wants me to do blood tests as she may think it may give some answers if I have any deficiencies ext. If anyone has scoliosis or has any idea of what may be wrong or how I can manage my pain please help me out. I’m missing important parts of school and struggle a lot with the pain. Thank you x #Scoliosis #BackPain
This year is very different because this month I was diagnosed that I have Parkinsonism. One of the symptoms is having balance issues but I’m stubborn and Monday I was out hiking (with my trekker poles) and I fell …hard. I had another fall a month ago. The first one I injured my shoulder but I didn’t go to PT yesterday because I felt light headed and kind of fuzzy and I have had a weird headache continually after the recent fall. It’s different than the headaches I get with the debilitating migraines I have been dealing with from Covid Long Haul. So I fear I may have a concussion. One more health problem, but it will fade. I can handle it…because I share this writing at a time when despite today’s challenges I feel very blessed because I survived so much from dealing with AIDS. PLEASE READ BELOW.
The day before Thanksgiving this year will mark the 35 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here, I am also sometimes consumed with guilt … Survivor’s Guilt. “Why me?” Why me in an opposite sense. Not why me… why did I become HV+? But why me … why am I still here and so many others are not? I am part of a small minority who made it through the 80’s when AIDS was considered a death sentence and are still around to talk about it.
Today many people call me a “Long Term Survivor.” They tell me that it is a miracle that I am still alive, and they honor my life and fighting spirit...but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS.” I had choices to make but none of them projected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people who came together to listen, share, understand, support and love each other in a way no one outside the group could ever imagine, could ever believe… could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.
We talked of our fears: of death, of pain, of hurt and how some of us were dealing with loved ones who did or did not know our plight, did or did not support us. We talked of our community that so many folks in the public could never understand. Those who misunderstood us, misunderstood HIV & AIDS, and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with, and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown. People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl.
People assumed we were all gay or drug addicts. These were obviously misconceptions sometimes, but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, including the possibility that they too may become HIV+. There were many who even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation, and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand.
At our meetings we shared horror stories: of families, partners and friends who turned their backs on some of us and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds). We talked of some doctors in the medical field from the military to the public who saw HIV+ patients wearing yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overblown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.
I am blessed to still be here today. It is easy to question why, and it can be very hard to have to process these reflections. So, the day before Thanksgiving is my anniversary. It is impossible for this holiday to come and go without my being reminded that I was diagnosed that day in 1987… 35 years ago. I later figured out that I contracted the virus in 1985...37 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 23 years ago and have stayed the same.
Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you believe things. I think I am blessed and the God of my understanding has looked over me. Why? I am not sure. Maybe I will be able to accomplish some things, to give back, to take my experiences and by sharing them make a difference in people’s lives. Or maybe I am just still around because I have been hanging on. Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that may change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
So, in retrospective sadness and current pride, I look forward to this anniversary every year and want to honor the spirits of those friends who I lost from those support groups, to honor those who I never met who shared our path, to honor all those hundreds of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss…
Moshe Mark Adler
November 27, 1999
May 24, 2021 edit
UPDATE: In this time of Covid, sadly I recognize death tolls like those from another pandemic: AIDS (with no vaccine even after almost 40 years). I looked them up...the numbers, including current ones, are staggering:
690,000 [500,000–970,000] people died from AIDS-related illnesses in 2019. 75.7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic (that we know of). 32.7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.
#ChronicPain #PeripheralNeuropathy #BackPain #Headache #Migraine #COVID19 #covidlonghaul #Disability #MentalHealth #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #TheMighty #MightyTogether #MightyMinute
☆ " Since I Started Shifting My Hour's To Stay Later Passed My Off The Clock Which Is Actually 8AM-2PM... My Shift's Seem To Be Getting Longer And My Workload More Stressful... I Honestly Cannot... Stand For More Than 3 To 4 Hour's... Due To My Crappy Body My Lower Back Pain Is Chronic... Because I Was Born With " Scoliosis "... And My Leg's And Feet Are The Worst Chronic Severe Pain... Due To My " Cerebral Palsy " Since At Birth... I Live With Severe Chronic Pain... And It's Also Another Full-Time Job... This Is Why I Don't Wish To Have Anyone In My Life Currently... I Hide How I Really Feel Inside.. The Outside Is Unavoidable.. I Walk With A Limp... And Drag My Feet When I'm Chronicly Tired... So Now I'm Having Issue's With My Hand's. I Use Them Alot... It Never End's Something I Feel Like I Just Want To Dissappear... " ☆ #Depression #Anxiety #ChronicPain ☆ SKADI KVITRAVN ☆
We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.
It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.
Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!
I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.
You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!
#Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
#Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether
Do you have any comfort items, accessibility tools, or even pets that help you while you're in bed? What makes your bedside helper helpful to you?
#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis #Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness #alwaysinbed
After trying for 3 years with Western doctors, I’ve been going to a Naturopathic doctor who diagnosed me with heavy metal toxicity (Lead & Mercury), Fibromyalgia, and Mold. Glutathione numbers were also lower recently. I also have chronic rash in body folds. I have had chronic lower back pain since a fall in a roller skating push in my early 20’s. I had a hysterectomy & cateract surgery on both eyes before I suddenly lost strength in my limbs within 2 days of each other. By 3 years was bedridden for 6-8 hours with vibrating tingling like having head opened up and dandruff shampoo pour in going all through my body. Overwhelming chronic fatigue. Odd pain issues but not all the time. Fatigue the most pronounced not pain. ATP Fuel, Glutathione and Clay detox with other things help. It’s been 7 1/2 years now and Now able to have Physical Therapy. I’ve seen a symptom wheel and have had most of them some before 7 1/2 years ago. Don’t know if those would count.?
?Has anybody else been diagnosed Fibromyalgia and not had daily all over pain? Where you had earlier pain like my lower back kind of issue?
? Does the other symptoms seem to accompany - like heavy metal & mold common? All of it just feels so crazy. Really trying to get to having more of a life. Really struggle to go sugar free even for two weeks to try getting rid of the rash.
So I had a spinal cord stimulator trial done yesterday. And aside from being sore from where they inserted the leads, I have 90% pain relief. I have CRPS mainly in my left leg, foot, and ankle. It is incredibly painful all the time. I have trouble sleeping and take 5 different medications for pain. I also have low back pain and sacro-illiac joint issues. Those are 80% relieved. I get the leads pulled in a week and then we'll decide if I get the unit implanted for good. But I am optimistic that this is the relief I have been looking for. #ComplexRegionalPainSyndrome