Connect
26 male, progressing sickness for 2 years, how to get help?
My story,
In 2023, at 24 years old, I considered myself a healthy, active and well rounded person. I enjoyed many hobbies including lifting weights, running with my dogs, playing guitar and camping. I was diagnosed with Type 1 diabetes at 23 years old and had extreme ketoacidosis. I adjusted well to the diagnosis and have been able to maintain my A1C between 5.9 and 6.3.
In June if 2024 I started noticing intense muscle cramps when moving in my extreme ranges of motion, primarily in my calves and pectoral muscles. In July of that year, I noticed some small hard nodules forming between my fat and muscle tissue in my pectoral and bicep muscles. I quickly booked a visit with my family doctor who determined my symptoms were not of concern and that I should “wait it out”. In August of 2024 my calves started to tingle, my body would twitch all over, I had bouts of constipation lasting 5-14 days, I was experiencing fatigue and myalgia. I visited the ER and had an xray and CT scan (with contrast) of my chest and abdomen, no abnormal findings. My family doctor ordered many labs including fecal testing, metabolic panel, iron, B12, vitamin D, immunoglobulin, aldolase and complete blood count, with no abnormal findings, besides my creatine kinase being slightly elevated. In October and November of 2024 my symptoms progressed, more small nodules down my forearms (not visible but palpable), bouts of shortness of breath, alternating constipation and loose stool, and now progressing weakness of proximal muscles. With these symptoms I saw multiple specialist including my endocrinologist, neurologist, oncologist, and a rheumatologist. I followed up with more labs (most same as before) with new test for thyroid functions, EMG’s, MRI’s, myositis panel and even a biopsy of the biggest nodule on my chest (~1-2cm). The only abnormal findings were serum creatine kinase levels above 5,000 and the tissue sample was identified to be necrotizing fat tissue (no cancer, yay). Still through March of 2025 my symptoms progressed to include trouble swallowing, neck muscles tingling and weak (to the point of not being to hold my head up after the work day), and sometimes was unable to hold urine in my bladder. The muscle weakness seemed to come and go in different muscle groups sometimes my legs, neck, forearms or shoulders for 1 week to a month at a time. The only thing that is constant are the nodules and muscle pain (aching and cramps).
Now, Sept of 2025, I have had more of the same blood test (including another myositis panel and complete blood cell count) with varying creatine kinase levels (slightly above normal ~200) and nothing else abnormal. All of my symptoms previously mentioned are unchanged with a few fun additions. I have started developing itchy bumps around my ankles, shins, forearms and chest. I am also intolerant to exercise including walking and light stretching. If I do movements that strain my core, I have trouble using the bathroom for a few days to a week (as I am unable to “push”). As well as hand and finger weakness/cramping (no more guitar playing).
Here I am now, hands cramping from typing, restless, exhausted and unable to do or enjoy any activities I once enjoyed, asking for help. I am at my wits end, can’t find any patterns in my labs or helpful research articles. I fear I am slowly dying. I am no fun to be around and can barely function at my desk job. I see another rheumatologist soon. I will be requesting a referral to a GI specialist. I feel like giving up. What else can I do? What should I do? How do I keep going…
Side note, I have been brushed off by seemingly arrogant and heartless doctors with comments like “Nothing is wrong with you”, “we won’t know what is wrong unless you wind up in the ICU”, “you are a diagnostic dilemma, no doctors want to work with that” and “you just need to lower your inflammatory markers by not eating meat” (mind you most of my labs indicate normal levels of inflammatory markers, with my C-reactive protein lower than normal). I share the pain of many who are in my situation and hope everyone gets the help they need with the compassion they deserve.
Like
Helpful
HugInterested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.
Connect
I am so sorry for your pain. I don’t have any suggestions but I do wonder if there is any environmental factor that could be affecting your health. Food is the obvious one, but maybe you are experiencing some toxin exposure that you haven’t considered.
Wishing you wisdom and help from docs who can determine the cause of your suffering.
-
Like -
Helpful -
Hug
1 Reaction@simmonsbre , wow, it sounds like you are having a hard time. You symptoms should sound familiar, but I’m not sure where I have seen them. It does sound like you have ruled out some things.
How is your type 1 doing? Your a1c sounds amazing. I have type 1 and have for over 20 years. It’s a bear imo. I manage pretty well, but don’t have numbers like you. More in the 6 range.
I recall having some muscle issues years ago myself. Mine included sore, very stiff, weak muscles. A muscle knot in my back and two frozen shoulders at once. Tests were inclusive. I got PT and cortisone injections. Eventually, the symptoms resolved over the course of 2 years. It’s always been a mystery.
I hope you can get some kind of therapy to help you stay active. Also, talk therapy has been very helpful for me. People often don’t realize the enormous responsibility type 1 management is. To me, it’s huge. It’s like a full time job where you work 24/7, no time off and no pay.
Getting online support can be invaluable. Have you ever visited the website TCOYD? It’s run by endocrinologists who have type 1. Lot’s of info there and entertainment. They approach this serious condition with humor and music. You might check it for info on your symptoms. It seems you are a good advocate for your healthcare.
Good luck with everything. Please post how you’re doing with things.
(Did the doctors explain what fat necrosis is? I took a look online.).
-
Like -
Helpful -
Hug
5 ReactionsHello @simmonsbre, I would like to add my welcome along with @parrot53 and others. I can't imagine how difficult this is to navigate at your young age. I'm hoping you learn more when you see the rheumatologist and GI specialist. Not sure if you've tried something like a symptom checker but Mayo Clinic has one here that might help you figure out questions you can ask your doctors - https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075.
It sounds like you are good at asking questions of your doctors. One of things that has helped me have a better conversation with my doctors is planning my conversations for upcoming doctor appointments. I found the information on how to do that on the Patient Revolution website - Tools for the Healthcare Visit information: https://www.patientrevolution.org/tools. Mayo Clinic Connect has a great search function and might help you find others with similar symptoms. Just click the search at the top of any page and type a few words or a phrase.
-
Like -
Helpful -
Hug
4 ReactionsI have been tested for heavy metal poisoning and generally have a well balanced diet. I have seen a “lifestyle” specialist as well and aside from lack of sleep, in their opinion I seemed to have my diet in the right place. I have tried no caffeine intake (for 2 months) and did try no read meat for 1 month. Neither of which alleviated symptoms. Thank you for the reply, it means a lot!
-
Like -
Helpful -
Hug
1 ReactionThank you for your reply! I grew up with a mother who is Type 1 diabetic and the transition for me was fairly natural and I was very aware of the disease. Having a smart insulin pump has been life changing! As well as when I was working out, it was very easy to keep my blood sugar 90-140 dL/mg. I am fairly well versed in physical therapy and have applied a relatively light regime of isometric holds and stretching. Unfortunately over time, those movement progressively got harder and more painful. I now generally am restricted to walking short distances and 1/4 squat holds, which limits pain and maintains some of my mobility. For some background, I am a mechanical engineer by profession but exercise science has been a passion of mine for half my life!
I did not receive a follow up from my biopsy where the fat necrosis was identified. Upon researching it is generally a delayed reaction to trauma (like falling) or could be triggered by severe blood sugar swings or highs over a long period of time. I have not been injured and I have not been diabetic for long, so the necrosis seems to be a mystery.
-
Like -
Helpful -
Hug
2 ReactionsThank you for your reply! I appreciate the links! I have exhausted the Mayo Clinic symptom checker and I seem to over constrain it with all the symptoms I have. Although I will have to try the patient revolution tool as finding others with similar symptoms could help narrow down all the possibilities! Thank you so much
-
Like -
Helpful -
Hug
2 ReactionsHave you had genetics testing? Does your elavated correspond to exercise? Are you on a statin for cholesterol?
-
Like -
Helpful -
Hug
1 ReactionWhich pump do you use? I have Medtronic 780 with G4 cgm.
I was thinking more along the lines of toxic mold or industrial pollutants from nearby businesses or cleaning products, laundry soaps ( I recently read that theses can cause hormonal changes), or food treated with chemicals. Wishing you success in rooting out the problem.
Dear @simmonsbre, Do not give up hope, ever. I did the rounds of about 10 specialists before my illness was finally diagnosed. Unfortunately it was a diagnosis of Motor Neurone Disease. I am not suggesting for a minute that is what you have, but rare disorders can puzzle the best of doctors, and it took me nearly a year to get diagnosed. Some doctors are so focused on their own specialities that they can't put together a whole range of symptoms. Friends and professionals are supportive to begin with but tend to lose interest if you are not getting "better" and don't know what to say. While you are going through the process, try to schedule one thing you enjoy every day to look forward to, even if it is just coffee with a friend or a favourite TV show. Don't let this illness rule your life - take control and keep searching. In the meantime, why not see a counselor or psychologist to discuss your issues and find some strategies for dealing with them? NO, I AM NOT SUGGESTING IT IS ALL IN YOUR MIND. Having been through a long diagnostic process myself I know what it is like to see doctor after doctor with no diagnosis and no treatment. Seeing a professional, even for a few sessions, will help you deal with the awful situation you are in and give you courage and suggestions on how to keep going. I speak from experience, as I ended up with one doctor (a psychiatrist!) I could trust and who believed in me and supported me all through that horrendous year. He gave me valuable advice on how to deal
not with my symptoms, but my feelings of worthlessness and despair. I am sure there is a professional out there to do the same for you, you need a tremendous amount of support. Take a positive step and start looking.
For what it is worth I empathise with you and understand your pain. For now the work to do is to not give up on finding a diagnosis and treatment, and to find professional support from someone who is qualified to talk to you about your situation and stratgies for dealing with it. All my best wishes, Ellu
-
Like -
Helpful -
Hug
2 Reactions