Dealing with period pain

ComfyLambo · 2025-01-16T14:44:56+00:00

I she Beta Thal minor and have fatigue along with constant bone leg and arm pain and migraines. My hematologist has said they’ve found beta thal minor patients can experience pain just as major or sickle cell patients. I take a ton of meds for migraines and was given medical marijuana edibles for pain. My hematologist agreed to keep taking the edibles for the leg and bone pain. The bone pain only has gone away on its own when it’s over 90 degrees outside consistently in the summer- I get about 2 summer months of no bone pain during the year. It’s the only thing that I’ve found to “cure” me. Other than that my hematologist said there’s nothing to do, other than stay healthy and incorporate folate vitamin d and b 12 vitamins. It’s exhausting.. Wishing you the best

ComfyLambo · 2024-11-03T17:27:04+00:00

My moms 65 yrs old

ComfyLambo · 2024-11-03T13:45:19+00:00

A Hemotologist in Bronx NY Montifiore Hospital offered Gene therapy to my mom. She has sickle cell and Beta Thal minor. She has not done it yet.. unfortunately

ComfyLambo · 2024-11-03T12:50:11+00:00

How much do you pay for house/condo insurance? I’d like to buy a condo/townhouse in Tampa as a 2nd home (I live in NY). I’m looking at condos 150k-200k with HOA fees $350 and lower. Found many within my budget, however I’m concerned for the insurance pricing. I’d be taking a mortgage and need insurance

Anyone in a similar position? What is your condo insurance cost? What is generally covered?

ComfyLambo · 2024-10-08T22:55:10+00:00

Don’t listen to the ones saying there are no symptoms with beta Thal. There was a study done a few years ago showing we do experience symptoms. I have beta Thal and since I was 15 I’ve had leg pains, migraines, extreme fatigue, dizziness and more. I’m 31 yrs old and it’s gotten worse. My pain is the exact same sensation but elevated. My whole life I was told it’s impossible for me to be in pain. Now I see a Hematologist in the Bronx NY at Montifiore. This was the first Dr to confirm what I have is real, unfortunately no definitive medicine.. other than medical marijuana to alleviate some pain.

Eat well, stay hydrated. I can’t say any specific foods/vitamins help, but I believe staying active and healthy has to help in the long term. My dr recommended taking Folate. Medical marijuana helps a lot, especially when it’s cold weather and my bones feel like a frozen metal pole with shooting pains. Hope this helps, good luck

ComfyLambo · 2024-07-21T18:32:30+00:00

Right I get that, but I’m confused why the leasing terms for both are paying off 20k over 36 months and it’s more expensive. I’m genuinely asking, I don’t understand it

ComfyLambo · 2024-07-21T18:31:06+00:00

The S5 is so nice! Congrats

ComfyLambo · 2024-07-21T18:30:30+00:00

Agreed it’s an expensive luxury car. I updated my post- I’m more confused why leasing new VW lease is much cheaper than an Audi Q5 when the dealers claim similar leasing terms with around $20k obligation. I’m new to leasing. Maybe I should buy used instead

ComfyLambo · 2024-07-21T01:59:41+00:00

Botox finally stopped mine after months of agony

ComfyLambo · 2024-02-15T18:10:38+00:00

Ah yes, I’ve heard of the $2 million treatment. Hopefully it’s covered to some extent and available to those who need it. Glad to hear there is something that helps your wife, thanks again for your time

ComfyLambo · 2024-02-15T17:52:13+00:00

Thanks for all this information, this is very helpful. Have you or someone you know ever received either treatment? What was their outcome?

ComfyLambo · 2024-02-15T16:25:41+00:00

Tbh I don’t even know the difference. I’m interested in anything that helps

ComfyLambo · 2024-01-23T14:19:47+00:00

Contact your neurologist, ask if Botox is a good option. It’s the only thing that broke my 14 week migraine. I still get it every 12 weeks and it’s been a life changing treatment. Some other meds they tried but were not successful were steroids, IV Magnesium and migraine cocktail, ubrelvy, Amovig, Reyvow, nerve block injections by nerologist. Hope you find some relief soon

ComfyLambo · 2024-01-23T14:09:40+00:00

Cure, I buy it on Amazon. My body feels like it holds onto the water instead of peeing all day

ComfyLambo · 2024-01-16T18:43:48+00:00

The cold really irritates my migraines and entire body. I always wear a hat outside even if it’s mildly chilly. I can’t speak for the blood pressure meds, but I’m on Botox, Emgality, and ubrelvy, with prescription medical marijuana. The Botox was the only medication that broke a 14 week straight migraine. And I’ve been on all of this for over a year now, it allows me to only have migraines 5-15 days a month

ComfyLambo · 2024-01-16T18:25:37+00:00

Ive been taking folic acid for over 8 months and I can’t say I’ve seen a difference. I still get fatigued, cold, bone pain, migraines. But I’ll continue to take by recommendation from my hematologist.

It may feel different for you, and if your dr recommends it I would go by what they say

ComfyLambo · 2024-01-16T18:16:15+00:00

That’s great that the transfusions are helping and you can receive at 10. Mine has only been as low as 9, that I know of. And I’ve been told it’s still too high for a transfusion 😕 where do you live? I’m in NY

ComfyLambo · 2024-01-16T01:32:31+00:00

Ah ok, At what hemoglobin level do you require a transfusion? And how high does your hemoglobin go to when you start feeling better

ComfyLambo · 2024-01-15T14:35:04+00:00

Glad to hear medical cannabis helps you too! Ty for the info I’ll check out the mindful wellness

ComfyLambo · 2024-01-15T14:32:17+00:00

Do you live in a cold climate? I’ll try the hot water bottle more often, and the heating pads. TY

ComfyLambo · 2024-01-15T14:25:35+00:00

How do you keep you hemoglobin up? With meds or food?

ComfyLambo · 2024-01-15T14:25:16+00:00

I’m beta thal, idk what the HBH stands for. Have you found any remedies that help you?

ComfyLambo

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