I stay in my home for months at a time.
Hello, We all have so much going on. I seriously need help but my wife tells me the doctors don't know what to do or how to treat my various health issues. I've had countless MRI's, CT, Scans, X-Rays, etc.. I have a closet filled with business jackets, sports jackets, dress pants, and so any shirts.... Nothing comes close to fitting. I am grotesque! Over the years I stayed active, exercised regularly, and maintained good physical condition. But while trying to stay healthy, I've ruptured my L4/L5 Spine, torn my right ACL, countless sprained ankles, wrists, etc.
I worked for a mfg company wearing a number of hats over a 38 year career. Many of the hats caused much stress trying to keep up to 900 people at on time Safe, Productive, Organized, Profitable. During the evenings I worked as an agent/manager for an entertainer. If I mentioned his last name most of you would recognize the name except the person I represented is a second generation. I worked 7 days a week, 16 hour day's. I'm not dumb but I really had to work far longer than most if I want to achieve. It seemed my mind was constantly racing at full speed, so much stress. One evening (about 10 years ago) I sat down for dinner , I specifically remember taking a bite, it was warm and very good. he next thing I remember my wife is trying to help me lay down. She is little but strong. I had passed out. After extensive testing, I was diagnosed with Adrenal Insufficiency. Around the same time, my previous spine and knee injuries (both had had multiple surgeries) began flaring up again. What was once a strong, healthy body began to change rapidly and dramatically.
I experienced an “adrenal crisis" and have been to the ER more than once. my abdomen would swell severely and never return to normal. My endocrinologist that I had an Adrenal Crisis, he said "No you didn't". The last crisis my BP was recorded right away and extremely low. When I told him the numbers the last time he was kinder. I never realized how many calories you can burn just by being on your feet. I've never been overweight but I had gained 40 lbs as my back continued to get worse. Approximately three years ago, my feet, ankles, and legs and abdomen began swelling excessively. I was diagnosed with Lymphedema. Since then, I have undergone 12 procedures to help manage the swelling in my legs and now wear compression socks. I also have a compression suit that also covers my abdomen. Unfortunately, despite more than a year of treatment, I have seen no improvement.
At one time I was 6’2”, weighed approximately 210 pounds, and was in good shape. Today I weigh nearly 290 pounds, largely due to the severe swelling and fluid retention. My abdomen has become extremely enlarged, and the spine pain has become overwhelming. I can no longer walk without assistance. To take a shower, even if I sit in the shower chair by the time I get dressed the pain is so severe my cane, walker and wife are needed.
I have consulted countless physicians, including spine specialists, gastroenterologists, and other medical professionals. Despite repeated testing, appointments, and evaluations, I continue hearing the same response: that they are unsure how to help. I have repeatedly asked doctors about the possibility of performing a procedure called paracentesis — a relatively common procedure used to drain excess fluid from the abdomen — but my concerns have largely been dismissed. In fact when mentioning "draining" my abdomen the doctors all have laughed about it.
At this point, I am deeply concerned about my health and quality of life. There have been months at a time when I have never stepped outside except for medical appointments. During one Dr visit, a former coworker walked past me in the waiting-room, I questioned if I should say anything because of the way I look then decided to say, "Hello Keith", he turned around, looked at me for a moment, then he said in a Loud voice, "Man, You got FAT!" Moments like that are painful because they do not reflect the reality of what I am experiencing physically and medically (and mentally).
My diet is very limited and primarily consists of protein, vegetables, and Greek yogurt. Exercise has become extremely difficult because of the pain, swelling, and mobility limitations.
If anyone reading this with medical knowledge or experience — may have insight, recommendations, or guidance regarding possible treatment options, I would sincerely appreciate it. Thank you for taking the time to read this. I have had intense therapy for my spine and knee (The pain became much worse after months of therapy. I also went to a licensed therapist for my lymphedema. The one thing that I felt was helping me was water therapy. Unfortunately the indoor therapy pool had a leak and the owner of the clinic was tired of dealing with it and closed it. I live in a small town in southern Indiana, this was the only such pool that I could get to. No longer able to drive because of all the medications I honestly feel like the clock is ticking. I requested if my family Dr. would at least request a personal therapy pool to insurance. I'm not asking for a big fancy indoor pool, just something that would be deep enough and enough do allow me to have some movement. Again, he laughed. *When I began my ramble I mentioned that I always struggled with learning, etc... I have been diagnosed with ADHD and Dyslexia. I am not dumb. Even though I can never go back at least I understand why I struggled and still do when I want to learn how to use an video editing tool for example, All those buttons, paragraph after paragraph of words all melt and blend. It's difficult to explain. My dear wife, the company she worked for shut down last month. She mows cleans the gutters, she does everything. If anyone knows of a way to make enough money online to help pay the bills I appreciate any suggestions or assistance.
What I deal with 24/7: Adrenal Insufficiency, Lymphedema, Fibromyalgia, Sleep apnea, Irreparable spine injury, right knee severe knee patellar subluxation, BPH, Severe Chronic Pain, ADHD and Dyslexia and a few other things I would rather not post/. Thank you to anyone who took the time to read this. I realize if you're here then you are struggling with your health. May God Bless and Protect you. Sincerest regards, Tom
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@tom1970
Dear Tom, I am sorry for the delay in replying to your message, and I thank you for it. I find I have SLOWED down quite a bit on the Gabapentin; the dose was doubled last week, now on 600mg a day. And...I am sincerely thinking of taking a vacation next week, cannot afford to go away, but can afford to STOP all the projects I create and just rest, pack a snack and go sit by the NY Bay for a tad, take naps, and just overall chill. Yes...I need to pocket my OCDs. My 2 side effects, thus far, from the Gabapentin, would be constipation and the past week I have noticed my eyesite is blurring and I need to use my reading glasses, even though I had catheric surgery on both eyes 2 years ago. Both of which I can deal with. Are the side effects worth it, I am going to say yes at this point. The pain in my body has reduced about 25%; what is left is RA. ENOUGH about me. How are you? Tom, just that you are reaching out is a sign that you are a fighter! Please know, none of us are perfect, and do we fight every moment of every day, NO. However, I have to believe if one can keep fighting, keep seeking help, keep looking for knowledge, and keep reaching out...there are some acceptable answers out there which can and will help us. Please do not give up my new friend, I cannot afford to lose you. Stay well, and keep in touch. Diane
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4 ReactionsHi Tom, it's Diane. I was glad to hear from you and I hope this finds you in a good place. Had to reduce dear gabapentin...had bad reactions to merely 600mg. Oh well, this is life, we tried. Not sure where you are, but I am on the Atlantic seaboard in the US and we are gearing up for a very hot week with lots of 4th Celebrations. My love is the parade of tall ships coming into port. Be safe, find joy and peace in the moments you can and I look forward to your recovery to health.
Hello Tom,
I am sincerely sorry for your health issues and for the sharp deterioration in your quality of life.
I am a retired critical care nurse and i wanted to address one of your questions to your doctor which he should have explained to you at the time. If he laughed he is very unprofessional!
Your question was about draining fluid from your abdomen.
Paracentesis is the procedure and unfortunately in your lymphedema it is not possible.
Paracentesis is performed to drain “free fluid” from the abdomen. The free fluid is called ascites which is caused from liver failure.
The fluid in your abdomen is not free fluid but is fluid trapped in the tissue and not able to be removed with a needle. I’m sorry.
Also addressing your acquaintance who made the Fat comment, shame on him!
It’s very hard to stay positive when you’re falling apart
But I believe in the power of positivity. Your wife sounds wonderful. Unfortunately health problems also affect our spouses so trying to stay positive will make her job as your caregiver easier.
I am trying to practice what i preach as i face my own issues. I have been a caregiver my whole life in my personal and professional life and suddenly the tables have turned due to a recent diagnosis.
Wishing you well my friend!
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9 Reactions@poppett May there be more people like you in the world!
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3 ReactionsI am sorry you are struggling. I too have been very overweight and the best thing that worked for me is removing ALL sugar from my diet. Can eat pretty much anything I want, even carbs galore! But absolutely no sugar, and if I can't resist less than 10 grams per day. Never more that that amount. There are many sugar free sweets out there that taste darn good w/out the poison. Yes, sugar is a poison. Stevia is a healthy plant derived substitute. I hope this helps as well for you as it did for me. Take Care.
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1 Reaction@tom1970 This reminds me a bit of what my brother went through, especially the lymphedema. His situation just kept getting more complex. It started with a meniscus injury/operation. The injury caused his leg to stiffen. He was overweight but used to work out extensively in the gym before the injury. This was about the time of the pandemic, when they closed the gyms here. He had been diagnosed with diabetes and chronic heart failure (had gotten a stent which helped and he felt better) so he was scared to get Covid. He got on an opioid for the pain, got addicted, and then got off it. Then came the lymphedema. They gave him diuretics but they didn't work and his legs began to leak. They put silver nitrate on his legs and he got severe burns from it. His wife had to apply lotion, wrap his legs in bandages and put on compression socks on him every day for weeks. He could hardly move. There is not a happy ending to this story. He got a pacemaker and suddenly his lungs were the problem. I can't speak to the specialists he saw or the medicines he was on. All I can suggest is what others have suggested - someone to look at the big picture. In the meantime, you might find a certified lymphedema therapist (CLT) here? https://lymphaticnetwork.org/ If you go see a CLT, be aware of the problems my brother went through.