anemia

Hi Everyone
Has anyone had infusions for the treatment of fibromyalgia? If possible I’d be interested to hear how your treatment went and if it helped at all ? Any info would be much appreciated. I’m getting nowhere with any Drs I see, and trying to see a Dr is becoming a nightmare.
Thank you in advance xx

#Fibromyalgia

Hi everyone. Thanks so much for joining. We are growing pretty quick! I am seeing a lot of people posting about having multiple conditions. I’m also reading some folks are just recently diagnosed and looking for tips for themselves or a loved one. I thought it might be interesting to follow up on the earlier question of “what caused your autoimmune condition” to explore what we think or understand about how/why our second, third+ conditions came to be.

For me, I only had one disease for 15 years (#AplasticAnemia that morphed into #PNH , which is a pretty normal disease progression). With treatment, I was able to live a pretty normal life - so much so that I was able to join a rowing club, which was a sport I had loved when younger. It was a great community organization located in a low-income area and they made it affordable for anyone who wanted to row. I had a lot of friends there and it was a big part of my life.

Over a couple years I got stronger and was able to join a boat with the stronger guys on the team and we became competitive. It was amazing to be able to be a part of that 4-person boat and we started preparing for a race. Then two things happened that I wish I had been more careful about - because I pushed myself too hard and I think that caused my second #autoimmune condition.

The two things were that the boat had a pull to one side, and then one of the other guys got switched out with a rower who had less experience. It was a “sweep” boat which means each of us only had one oar - 2 of us rowing on one side and the other two pulling on the other side of the boat. The way it worked out, the newer/weaker rower was paired up with me. The two other guys were super strong, over 200lbs each and super strong - and then on the other side was me with my autoimmune #Anemia , trying to pull harder to support the newer guy, so the boat would stay straight. What’s more, the boat’s rudder problem meant it was pulling to our side already, and we had to make up for that as well.

This played out in a few practices where the boat would be turning and my teammates would be yelling for us to pull harder to keep it straight. It was really intense work. After, I remember saying kind of quietly, this is a little too much for me. I wanted them to hear me and suggest switching seats to balance things out. What I look back and wish I had done differently was to really speak up for myself and say, Hey I need to switch seats, I can’t make up for this imbalance. I wish I’d listened to my body and accepted my limits. But I didn’t want to stick out or bother anyone, so I kept trying to make it work. I think this was my mistake.

Eventually it was race day and my boat was scheduled for not one but two 1,000-meter sprints. At the end of the second one, pulling as hard as I could, I felt like my lungs got all gravelly and sharp, like I’d breathed in a ton of smoke or singed my lungs somehow. Over the following year, I developed a strange cluster of symptoms that an allergist/immunologist eventually concluded was probably #MastCellActivationDisorder or Syndrome (#MCAS /#MCAD ), a dysregulation of the cells that store leukotrines, cytokines, histamine & more—things that help us fight off allergens and invaders and rally the rest of the immune response. It turns out that river I rowed on in that low-income community has one of the highest concentrations of pollen and smog, and was also a decommissioned superfund site. All toxins that I was sucking into my body super deep as I rowed and breathed as hard as my lungs could work.

To this day, I’m super sensitive and knocked out by any amount of pollen in the air and wear a mask outside most the time, even while taking my doctor’s recommendation of 4x the RDA of Zyrtec, plus an antihistamine that’s not even approved in the US, plus a nightly asthma maintenance QVAR puffer. My mast cells got way overstimulated or something during rowing that year, maybe that specific second race, and now they are trigger-happy to spill their immune response contents into my bloodstream, causing me to go short of breath, flush & itch everywhere, and cause my bowels to vacate at the slightest provocation.

I’m a bit of a storyteller and I know this is long, but I think it’s important to remember that with systems as sensitive as ours with autoimmunity, even isolated instances of intense stress or overdoing it can push us over the threshold of what our bodies can manage, and sometimes lead to lasting/lifelong effects like additional autoimmune responses.

So for those of us who are new as well as those of us who have been living with #autoimmunity for years, the advice to “take care of ourselves” is super important and something a lot of us may need to learn how to do. I never learned how to identify or respect my limits growing up, in fact I was kind of required to constantly live beyond my limits. I think that led me to chronically push myself harder than was healthy and now I have a few autoimmune diseases to show for it now. We can’t always control or prevent stress that comes our way, but I think we can avoid piling it on with some of our decisions.

So I am working on and hope you all can give yourselves permission to say no, not feel guilty for resting & recuperating, speak up when things are too much, and learn to love the experience of our bodies just as they are.

Love you all. If you have stories to share, I would love to hear them,

I’m anemic and have been experiencing symptoms since 2019. I know I need nutrients to keep my anemia managed but when it’s too hot to cook I don’t always want to eat. Slide me your recommendations for summer-friendly, easy meals #Anemia #IronDeficiencyAnemia

OPPORTUNITY FOR PEOPLE WITH WARM AUTOIMMUNE HEMOLYTIC ANEMIA (wAIHA) TO PARTICIPATE IN AN INTERVIEW PROJECT

Global Patients is collaborating on a research project to better understand the experience of living with warm Autoimmune Hemolytic Anemia (wAIHA). The research project is being conducted with IQVIATM, a healthcare research firm (www.iqvia.com), and a pharmaceutical company that is working on developing therapies for patients with wAIHA.

We are seeking individuals diagnosed with wAIHA who are aged 18 years or older.

The research will involve individuals diagnosed with wAIHA participating in a telephone interview lasting approximately 75 minutes. In appreciation of the time required, we are offering $200 to compensate participants for their time.

The purpose of the project is to understand individuals’ experience living with wAIHA and get feedback from individuals diagnosed with wAIHA on some questionnaires that are often used to assess wAIHA in diagnosed individuals. These questionnaires aim to provide researchers and clinicians with an understanding of people’s experiences of living with wAIHA.

If you are interested in participating and are eligible you will not be asked to complete the questionnaires. Instead, we would like to get your perspectives on whether the questions in each of the questionnaires are relevant to your experience with wAIHA, comprehensive, and easy to understand. Your input will help to ensure the questionnaires are suitable for use in future clinical trials to more accurately capture experiences of people living with wAIHA.

The project is strictly for research purposes; there will be absolutely no sales nor promotional activities.

Prior to the interview, IQVIA will ask you to obtain confirmation of your wAIHA diagnosis from your physician or staff at your physician’s office. This information will help us confirm your eligibility for this project.

If you are interested in participating in the project, or have any questions, please contact us at rebeca@global-patients.com

Many thanks for your time and consideration!

#Lupus

#Anemia #Research #PAIDSTUDIES

#Emptiness #Emptiness

When my depression gets extremely severe I feel this deep sense of hollowness inside and complete desolation takes a hold of my life. For a very long time I had no idea what to do other than let it overtake me as long as it did. I had mental illnesses before my physical ones but I was unaware since I was so young. I got Inflammatory Bowel Disease when I was 20 and diagnosed with Ulcerative Colitis. Now my GI doctor at the Mayo Clinic says I have Crohn's disease. Anyway, this disease brought out the depression and anxiety a great deal so I believed it was the cause. However just recently, I was told I had Complex PTSD and so many things made sense, and the fact that I thought about suicide when I was in 4th grade and tried it horribly but luckily badly my Junior year in High School definitely demonstrates that I had mental illnesses back when I was school age. To me, it was just a logical way to deal with wanting to leave my house because I couldn't deal with my mother's abuse any longer. And wrongly, I thought if something happened to me she would care more. I tried to go back to school but kept ending up in the hospital so I was always filled depression and just having the disease gave me great anxiety. I was so bad they often had to almost sedate me with high doses of IV Ativan. My dad had died six months before I got sick and he was the only person I knew loved me, and my getting sick proved my mother and both my older brothers could not care less, since they abandoned me and left my care to my boyfriend of 2 years, and never came to visit except once. I never was able to graduate, not for a long time.And that was a sense of shame and feeling of unworthiness that filled my life as well.There's a lot more to the story, but I don't want this to be that long. But the loss of my father was an incredibly huge impact on my life in a negative way since I never and still really don't know how to deal with death and grief, and it brought back 2 years ago when I lost an extremely close Uncle of mine to AIDS, both were way too young to die; and their deaths left me with an emptiness that beat all other types of hollowness that have occurred throughout my life. I pretty much think of them every day and just wish they were still alive and with me. I believe the grief I carry from them and now a few others often is one of the main root causes of my depression, and makes me feel the complete desolation around me and complete emptiness inside. Thankfully I have a couple of very supportive people who do their best to help me through it, which means a lot, but sometimes the deep depression just has to run it's course throughout me.

#Emptiness #Depression #Anxiety #Shame #complexposttraumaticstressdiso rder, #CPTSD  #Grief #IBD #inflammatorybowel disease #CrohnsDisease #UlcerativeColitis #ChronicPain #sexualassualt #Anemia #RheumatoidArthritis  #Osteoporosis #Insomnia #ChronicIllness #Disability #MentalHealth #MightyTogether

I am recovering from severe anemia due to PCOS, and since then I’ve dealt with chronic pain in my back,legs and knees. I’ve had chronic pain for years buts it’s gotten worse and I’m still being tested for a couple of autoimmune diseases.

With all of this happening, I’ve had to stop doing what I love and am very passionate about because everything is unmanaged.
With those who struggle with chronic illness, how do you keep doing the things you’re passionate about. The things that create joy in your life? It’s really affecting me not being able to do the things I like. #ChronicPain #AutoimmuneDisease #PolycysticOvarySyndrome #AnkylosingSpondylitis #Anemia #MentalHealth

For over 2 years I’ve been receiving iv iron and blood transfusions to keep my hemoglobin between 7-9
Drs have run all kinds of blood tests bone marrow etc
They can’t figure out why I can absorb iron and produce red blood cells
Any one similar
#irondeficiencysnemia #Anemia
#unexplained

I need to vent to people that get it. My pain has been horrible recently on top of other issues I’ve been dealing with. So, I was being tested for celiac and the blood test came back negative…I’m waiting for the sample results to come back. The doctor has already said he wants to do a colonoscopy because of my anemia. This same man did a colonoscopy a year ago. I’ve already had one major stomach surgery. I had such a large hiatal hernia, that my stomach was in my chest. So I’m used to being poked and prodded. I’m frustrated with having to schedule another colonoscopy. I’m 33 and this is the 3rd one I’ve had. I’m losing it over here. I just want answers. #IrritableBowelSyndromeIBS #Anemia #NissenFundoplication #Stomach

Ugh #HeartCondition problems! My 13 year old is currently in the middle of a #flare up with his #pericarditis and my 8 year of had a bad #nosebleed Friday night so she is now on iron with the hope of not developing #Anemia ! the fun never stops around here!!! we are doing ok though as always we #JustKeepSwimming

Who's the unlucky person that gets an anaphylactic reaction after an iron infusion. Me that's who. It was a severe allergic reaction that caused difficulty breathing, chest pain, rash, and severe itching.

I had it all planned out,
1. Get IV.
2. Get lab work done,
3. Get Iron infusion
4. Get Inflectra infusion.
5. Go home and start to feel better.

Fu#*ing body just doesn't want to follow the plan. Seems the plan includes hanging out with Mr. Sharp Belly Pain for who knows how long and starting Prednisone again.

Emotionally numb. #IronDeficiencyAnemia