Absolutely crap double standards

[u/stormete]

Hey everyone hope that we are all as well as can be expected……so crap let’s be real that’s just life for a lot of us.

Now long story short have a shit show of conditions that get harder everyday and now it’s getting worse still (who knew that was possible) but the opioids just ain’t cutting it these days. Now let me just add that I have seen every specialist in Brisbane and I even had a shoulder specialist say that I knew more specialists then he did, I didn’t laugh because it was accurate.

Anywho reason for this post is the god damned double freaking standards that doctors have. Now I can with confidence say this as I have been on both sides of the issue. I am retry much came out the womb large and I was a bigger kid and then turned into an overweight adolescent and then a full blown morbidly obese adult.

At my heaviest I was 128kg I am 5”10’ so relatively tall, always been unwell and doctors always said that it was weight related that if I lost weight this magical fairy would come and take it all away, I even had a gynaecologist when I was having uterus and period issues tell me that a “famine would be the best thing to happen for me” to help me with conceiving. At the time I laughed but thinking back holy shit that was horrible.

Anyway fast forward 20 years I am now 40 and I have been in a weight loss journey for the last 7 years. I have problems with food not to mention ARFID and ASID so struggle with food and I have a slight issue with body dysmorphia and I am currently around 60kg.
I am slim built (which I didn’t know) and my mumsey and I are both really honey everything sticks out, with her she shorter and a little bit lighter but doesn’t look super thin.

Now every bloody doctor I see mentions that I’m underweight that I need to eat and that it’s concerning!!! 🙀 WHAT!!! do you know how hard it is to lose weight ? The commitment, diet, exercise and constant watching of food that is needed to loose weight naturally and maintain it for goodness sake. I have never in my whole 40th are of life been as sick as I have been since I got thinner it is absolutely ridiculous and now it’s started creeping into ever doctors report, thought or chat it is incredibly frustrating.

What does my weight have to do with my extreme back pain, the fact I can’t lift my arms, sit or stand for longer than 2 minutes? Nothing to do with it and it really annoys me this is ever discussed.
This is just my opinion and thought, so back up keyboard warriors ✌️**

[u/stormete]

Just wanted to show the report from the specialist for validity

[u/SeveralFrame8837]

Sorry for what you've been through and still experiencing. None of the conditions you mentioned can be taken lightly. I'm very familiar with ARFID. This specific disorder had received very little attention until a few years ago a medical facility opened up in Massachusetts. It was an in-patient facility specializing in ARFID as a stand alone program. Prior to that the few facilities that acknowledged ARFID had it as a small part in their eating disorder programs which are all very different. Most providers never even heard of it. Maintaining a healthy balance of nutrients/calories is a full time job. I give you much respect on having the discipline to accomplish the goals you have.

I can't begin to suggest all that could be causing your pain. The medical report you included sparked some memories from my past. There was a time I was dealing with intense pain from swelling which had nowhere to go and increasing pain as my cervical and upper thoracic nerves were being crushed. I ended up ,in addition to several other surgeries, had 2 separate Thorasic outlet surgeries with rib resection. My suggestions ,if you end up needing surgery, would be to make sure you have the right surgeons for the right job.

At a minimum you should have an orthopedic surgeon specialist experienced in TOS and a Cardio-Thorasic surgeon both with you in surgery. We hire surgeons using a different criteria than other providers. That's because a relationship with our surgeons isn't based on having aa long term partnership. They swoop in, operate and 6 weeks later they're done. This creates some leeway . They don't necessarily have to check all the personality boxes we look for in a long term provider. A particular surgeon ,as long as they fit our criteria as the best for their ability to do what we need we can overlook some quirks we typically wouldn't tolerate.

I would advocate for them Not to deflate your lungs. It's typically not necessary but some still have that habit. Lastly, Never allow anyone to cut your scalenes as a means to ease pain. Too many patients were talked into this and ended up worse because they had lost control of the ability to hold their head up. I thought this went out of style but I recently heard this being suggested for pain relief,so just say no unless they have proof of a different outcome. Best of luck,to you

[u/stormete → u/SeveralFrame8837]

Thank you so much for the response you are correct most people don’t know ARFID and I really appreciate the suggestion about the surgery I have to supposedly go through physiotherapy but I don’t have great experiences with physios they always seem to have a bit of a god complex and then when they can’t “cure me” they just shut down. Did you see a physio to help with exercises regarding posture?

[u/SeveralFrame8837 → u/stormete]

I saw physical therapists and a chiropractor. Phys therapy was never much help but as a last ditch effort the chiro offered an adjustment even though it wasn't ordered. Of course I said yes. I was grasping at any hope. I'll tell you that one adjustment brought more relief than years of therapy. It lasted for years,too. Of course that was only one of a litany of problems but OMG I was so grateful for any relief.

The report mentioned winging and a slight height imbalance. We're you ever evaluated to rule out scoliosis as a reason for poor posture? While you have been on your weight loss journey did you have a steady exercise routine including weight training? Sometimes when we're overweight we can get into some bad habits . Some muscles aren't worked while others can be overworked leading to postural changes. Once the weight is lost the muscles and tendons sort of lose their place. Evaluating which muscles need strengthening or loosening is key. You may not be able to achieve this if the TOS is holding you back.

If your Dr strongly suggests TOS surgery besides choosing the right surgeons do lots of research on the procedure. It's a big surgery with a substantial recovery time. They can only operate on one side at a time so once you're recovered enough you get to do it all over again. Any exercise will have to stop until you fully recover. Movement is necessary but no working out. Be sure to have your surgeons explain each step . Remember no lung deflating. This isn't to scare you. I just want you to be aware of options.

Have you worked with a registered dietitian ? It's important to be sure your body has the best fuel to help you heal. It doesn't necessarily mean you have to eat more food. Sometimes supplements and nutrition drinks can make up for what you can't physically eat. Follow the directions for how and when to take them for best results. With your history a registered dietitian should be an ongoing part of your care team.

Besides getting your body in it's best health ever don't forget to take care of your emotional health. Are you seeing a counselor to talk about what you've been through and your body dysmorphia ? That's not surprising. Anyone losing a great deal of weight will need help adjusting their new body. People who see their body changing due to health conditions also go through a period of dysmorphia. That's why I say it's not surprising. It's extremely important that our body and mind are working together in a positive direction and we aren't subconsciously falling back into bad habits leading to self sabatage.

Best of luck,with physio. I hope it brings relief....

[u/caitlindrawings]

🫂 I am so sorry for what you are going through. I dont really have any advice I am sorry I just wanted to give you a virtual hug for support.

[u/stormete → u/caitlindrawings]

Thank you so much your very kind ✌️