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    My Invisible Illness

    I would like to open up about my invisible illness. I first realized there was something wrong about six years ago when i came to New Zealand in couple of months I got really sick had this persistent pain in my body and I kept getting this shooting pain from my neck to lower back. My pain became more widespread, more frequent, and more intense when I was at university.

    I went to several doctors and specialists had several exams for past 6 years finally I was diagnosed in 2022. The neurologist gave my invisible illness a name Fibromyalgia. I was finally relived they found what actually my illness is however it is a chronic illness which is lifelong and has no cure and also accompanied by chronic fatigue and 100 other symptoms.

    Living with fibromyalgia means living with a chronic pain condition that greatly influences daily life. I feel pain all of the time and this affects my ability to do day-to-day tasks.Every task I choose to do has a trade-off with another. For example, if I choose to cook something, doing the laundry becomes more difficult.

    As soon as i was diagnosed,I was forced to slow down all my activities both in personal and professional life it had gotten so worse that full right side of my body from neck to feet was in so much pain i could barely move, close my fist or hold a cup or grab the spoon to cook or eat.

    Hence i had to make so many changes in my life to gain back strength and mobility slowly back to my body.I had to start taking different medications and therapies with many trials until my doctor found what worked better for me, many meds I was on, messed with my sleeping pattern made me feel nauseous and dizzy whole day and others messed with my stomach lining. I tried to work out because I felt that staying active changing my diet to vegetarian would help me sadly it worsened my symptoms even more. The most challenging aspect of fibro, for me, would be the fatigue, since it prevents me from doing a lot.

    Unfortunately, there are not too many medical experts in New Zealand who have done research to understand what I have, and how it affects my daily life. My husband is my number one supporter and he helps me with my stress which is a trigger to pain, but there are also those who don’t understand or care to, so I just distanced myself from those people. I will continue to remove such people from my life, whether blood related or not, if you are not concerned about my wellbeing then I don’t need to have you in my already small circle.

    In the last six years there has never been a day my body was without pain. I dont even know how it feels to be without pain anymore. I can’t be on meds 24*7 so i try to get as much rest as possible. As the meds have other side effects which causes other health issues.Honestly, i have tried all the pain killers in the world none of those have ever made my pain go even 20% less . There are times when I feel like nothing works and then i started to research and study on this illness myself.

    With my findings and study for months i found out that lifestyle management is the only solution with people who have chromic illness. Since western medicine doesn’t have any cure i studied Ayurveda and gain knowledge around it and observed myself by doing trial and errors with Ayurvedic diet and practising spiritualism as a result to balance and manage my lifestyle Ayurvedic food diet which works for me in subsiding symptoms related to fatigue and stomach lining. Spirituality also really helped me such as meditation and yoga in order to focus on the positivity around me and to push myself to keep fighting with my body in order to live my life to the fullest.

    As far as being open about my illness & symptoms, I hate to complain, because I know it can be annoying to hear someone talk about how much pain they are in daily, so I keep it to a minimum. I hate to hear that it will get better, when I know it’s not going to get better because there is no cure. So, I had kept it to myself. Remember to be kind to people as behind that smile we don’t know who is fighting a battle not everyone likes to open up about their struggles. I have had people commenting on my life about gaining weight or not going out or visiting families and friend. Last six years has been a roller coaster ride for me. I have been faking being okay!

    My biggest battle is the pain I deal with daily, but the biggest is putting on a brave face, getting up and starting my day and trying to keep up with my daily responsibilities either personally or professionally. There was many moment in my life where i would want to scream at the top of my lungs. I just have no control over this illness that has taken over me and i would want to take my life. Then i look around and see I have family who i love dearly, and one look at them, tells me that my life is important and worth fighting for.

    Honestly taking it one day at a time, is how I balance my illness in my personal and professional life, there is no other way. I had always been a high achiever and proceeded to put a lot of pressure on myself in every aspect of my life hence people always say i am lucky whenever i attained my goals whether it was graduating with academic excellence being the top scholar or getting a corporate job at management level or buying a brand new home or travelling around and buying luxury items at early 20s it is not luck it is hard-work sacrifices and most importantly journey of fighting with my own body, health and mind to live life and achieve of my dreams. I just want to say to each one of you if your healthy you are lucky one as Health is Wealth!!

    I would like people to know and understand that this condition is real and it’s depressing- please be supportive. If you find that you can’t be of any help to that person suffering from Fibro, then remove yourself from their lives, and spare them further pain.

    My words of encouragement for others who are living with Fibro are to try to find a doctor who is caring and believes in your pain, and work with them in finding medication that can help you control some of the pain, because right now, there is nothing that take it all away. Continue fighting, and don’t give up, we have people who need us and depend on us, so we must find a way to fight to continue living. And lastly we should all come together and help us spread the word, and know that you are not alone.

    Lastly, this message was not for sympathy it was for awareness in the community which is must needed.
    #Fibromyalgia #ChronicPain #fibromyalgiawarrior #illness #Fibro #healthiswealth #Bekind #ChronicIllness #symptoms #treatment #RheumatoidArthritis #FibroFog #Medicine

    27 reactions 6 comments
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    Benzoyl substitutes for anxiety

    I've been having some issues with the psychiatric medications I'm currently taking that were prescribed by my psychiatrist. For example, lorazepam (Ativan) helps a lot with my anxiety, however, it makes me feel sleepy which is problematic since being alert during the day is important (especially with full-time college coming up soon for me). Then with antipsychotics, I need to take them but they also either seem to just knock me out and/or cause major weight gain (which is also unhelpful minus with my insomnia, but it causes extreme daytime drowsiness and I've also struggled with an eating disorder on and off for the past 11 years, so that can just trigger me to relapse into unhealthy eating habits).

    I would ask my psychiatrist personally but he's very quick during appointments and basically just prescribes a pill then sends me on my way.

    Anyways, to go back to the lorazepam/ativan issue, I also worry a bit about the addictive quality of that medication due to my addictive personality & tendencies both in the past and present.

    But I don't know of a better alternative and I'm tight on money so (since most psychiatric medications are free in Ontario), my best option financially speaking is to take prescription psychiatric medications, since I don't have to pay for them. I'm on ODSP (Ontario long-term disability), so finances are extremely tight/I'm in poverty (note: I'm not being dramatic here, that is a genuine fact and you can look it up yourself if you don't believe me).

    Anyways, basically my question is, how can I determine which psychiatric medications I should take when my psychiatrist isn't thorough or even borderline malpractices (and doesn't even give me drug info when giving me new prescriptions), and there's very long waitlists to get a new psychiatrist? Should I just call a pharmacist and see what they'd recommend maybe or should I not because psychiatric medications aren't necessarily their specialty (since that's what psychiatrists specialize in)?

    I don't know what to do and I feel like my doctors don't either.

    #MentalHealth #treatment #Doctors
    #Psychiatry #Psychiatrists #Psychmeds #medications #MentalIllness #comorbidity #ADHD #Insomnia #SideEffects #comorbid #Anxiety #Mania

    18 reactions 18 comments
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    I'm thinking of taking a trip

    After living in six different countries, I have been back in my home country since December 2019. My #Anxiety and #Depression got so bad that I felt I had no choice but to come back here. I had to give up on my masters degree and my career aspirations. I lost the capacity to enjoy or be curious about new people and places because of how my #MentalHealth was deteriorating. For the past couple years, I've been trying to access mental health #treatment with really not much to show for it.
    But, I am thinking of taking a trip. It is still within my country, it would be for just 5 days, and it wouldn't have to involve a lot of socializing. It's more expensive than I would normally go for, but if it helps me have a #Breakthrough then maybe it is worth it.
    My trip is tentatively planned for January, but I will have to make some phone calls and do some planning about work duties. I'm feeling anxious. I'm feeling worried that my mood will crash (Nov-Jan is the worst time of year for me), and I might not even make it on the trip at all. I am also feeling a bit excited, which I haven't felt for a very long time.
    #Travel #Vacation #DistractMe

    8 reactions 2 comments
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    New spoonie

    Hi I'm new here on mighty. I just signed up yesterday but I already forgot how I came across this platform, thanks to my #BrainFog lol

    It's been 2 years and 7 months since I contracted #COVID19 and have been suffering with #longcovid since then. Despite hearing all kinds of denials possible from doctors, now I am diagnosed with #MyalgicEncephalomyelitis and #Fibromyalgia and many more. Not that the labels help with my symptoms, but they surely helped me look in the right direction when searching for possible #treatment plans.

    I'm almost 40 and been #stuck at home mostly. I've recently been approved for a public transportation access link service so I'm planning on using that from time to time. I use a #Walker #Rollator and occasionally a #Cane when I go out to the doctors.

    I guess I'm here to connect with others going through similar things whether it be a longcovid, PASC, fibromyalgia, ME/CFS, arthritis, spinal stenosis, or more symptom-specifically #HypersomnolenceDisorder #Hypersomnia #PeripheralNeuropathy #ChronicPain #ChronicFatigue
    I am quite new to this #Spoonie life and trying my best here.

    3 reactions 2 comments
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    Wellness Wednesday: Insulin Use In Type 2 Diabetes

    Insulin use in type 2 diabetes is surrounded by many misconceptions and prejudices.

    It was taught to many people, including myself, that using insulin as a treatment was a sign of failure.

    It was something I remember being taught when I was born with gestational diabetes in two of the three pregnancies I had. As long as you exercised and ate right, I was taught that was a sign of success. However, taking diabetes medication or using insulin during your pregnancy indicates that you didn't do enough to control your numbers and you failed to succeed.

    Since being diagnosed with diabetes, I have learned the truth about the use of insulin in type 2 diabetes:

    💙 Insulin is not a sign of failure.

    💙 Using insulin is not a sign a failure.

    💙 You are not a failure for using insulin.

    When insulin is used to manage your type 2 diabetes, your body simply needs a little extra help to achieve the target levels set by your healthcare provider to maintain optimal health.

    My colleague, Corinna, wrote an article that really puts things into perspective:

    type2diabetes.com/living/insulin-fears-misconceptions

    ❓What were some of the misconceptions you had about the use of insulin?

    ❓What are the takeaways that you have after reading the article?

    Share your experiences and thoughts in the comments 👇🏾

    #Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #ChronicIllness #AutoimmuneDisease #Lifestyle #EndTheStigma #insulin #Health #treatment #Support #SupportGroups #MightyTogether

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    Wellness Wednesday: Accessing Affordable Non-insulin Diabetes Medication

    Today, I want to share a quick resource from the Association of Diabetes Care & Education Specialist on Non-Insulin Diabetes Medication Cost-Saving Resources.

    This is a list of drug manufacturers and organizations that provide cost-saving programs that help people access diabetes medication.

    www.diabeteseducator.org/docs/default-source/practice/educat...

    Remember that this is not a permanent solution, but one way to help people with diabetes afford lifesaving medications.

    #Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #Lifestyle #HealthCare #Health #treatment #financial #Support #SupportGroups #help #MightyTogether

    2 comments
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    When will it change? #treatment resistant depression #major depressive disorder #Anxiety disorder #eating disorder #PTSD

    Does it ever get better? I do most of what I have to do with extreme effort - work, home, existing. I have mastered the “facade” most of the time. People don’t get it. If they could be in my shoes for an hour they wouldn’t last. I know people have it worse. The black hole doesn’t end. I’m tired of getting guilted into staying on earth. I don’t want others to take on my pain, especially my kids (21&24) I’m not being fair to anyone. Rock-hard place.

    3 comments
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    Question #TreatmentresistantDepression #MajorDepressiveDisorder #ChronicDepression #treatment

    Is anyone else putting everything into treatment but it just isn’t working? Or am I just being difficult? I’m currently off of work (AGAIN) and in an Intensive Outpatient Program. I participate in groups and am “compliant” with everything they say. I’m on many meds and have tried many more. I’m tired…

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    Can’t ACCESS treatment!

    The only available treatment for my 16 year long battle with a secondary autoimmune neuropathy is unfortunately inaccessible to me due to:

    - insurance not willing add it to its coverage guidelines yet

    - out of pocket cost being $9.7k/infusion.

    According to my doctor, I need these infusions for at least 12 months to start.

    This is what medical exclusivity looks like.

    I live every day with neuropathy burning me from the inside out, which is quite literally hell and I cannot access treatment.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #treatment #Disability #Accessibility #access

    38 comments