Chronic Fatigue: Finding someone who can help me

Posted by statenislander @statenislander, Sep 25 2:35pm

I'm in a desperate situation, and I've not been able to find anyone to help me.

I've had a slowly worsening chronic fatigue/weakness problem since the day it started 21 years ago.

I've changed my primary care physician at least a ½ dozen times since I first complained about it in 2010, because they don't appear to take me seriously.

The usual response is to tell me to lose weight, exercise, and send me out for the standard blood tests, which always seem to come back negative. I'm given an appointment to return in three months, but the fatigue subject is never addressed again on subsequent visits, unless I bring it up. (A 65lbs weight loss didn't result in any improvement in my condition).

In September of 2003 I came down with an extremely bad "cold"(Respiratory infection). It began to subside after a couple of weeks, and was followed by intense coughing, which also lasted couple of weeks before also subsiding. (But not completely). This was followed by a feeling of an "itchy" Trachea, which lasted a few days.

Then one morning I woke up to go to work and I had to put a lot of effort into walking up the hill from my house, which for the first time ever left me winded. So, it was over the course of a single night that my chronic fatigue/weakness problem began.

After that respiratory infection, jogging for just five minutes, would cause an intense coughing bout that would begin 20 minutes later. I soon noticed that it wasn't just my legs, but all muscles that seemed to lose their strength. This problem has progressively gotten worse over the last 21 years. (Though the cough itself finally almost completely subsided two years ago).

The fatigue began making it difficult to shave, brush my teeth, raise my arms above my head, or do anything requiring strength, stamina, or steadiness. (This weakness seems to have also effected all functions below the waist). I began to get muscle cramps ("Charley-Horses"), as well as DOMS(Delayed Onset Muscle Soreness) very easily if I strained or stretched too hard. And sometimes for no apparent reason at all. Particularly in my upper back, neck, abdomen, calves, quadriceps, hamstrings, feet, neck, and my adductors(or Psoas) where inflammation flare-ups have resulted in ER visits because of extreme difficulties in walking.

I also started experiencing "the burn", which used to only happen when exercising. Now it began happening in my glute/thigh areas during sleep, and I have to continually change position to combat it.

I started to have to fight a tendency for my legs to "kick out" when I walk, and I can barely get up the stairs outside and inside my apartment. And if I lay or sit for even just a few minutes, when I get up my muscles are at their weakess and very unstable. Particularly my lower back, where I have an injury that seems to affect my front hip, causing me to limp when I walk. And resulting in my right leg becoming shorter and even weaker than my left over the last two years.

I'm weakest upon waking up., and standing up on a moving bus is difficult due to very low core strength. And it takes 20 minutes to walk home from the bus stop when I used to do it in 5. Lately, I'm also prone to falling down if I'm not careful. I cannot walk a normal pace for one block or even across the street without having to stop to recover frequently because of my fatigue problem, which now includes an "ache" deep in the center of my chest, where it feels like there is not enough room.

A couple of years ago I was diagnosed with an irregular heartbeat and Ablation surgery was strongly recommended. But I'm apprehensive about that procedure due to my weakened state. My deterioration seems to have accelerated over the last three years, since my bout with COVID-19, which landed me in the hospital/rehab for almost two months.

Over the last year my body fat increased drastically as my muscle tissue atrophied. (I might have Gynecomastia). And for some odd reason a cut in more than half of my calories comsumed daily has not effected a drop in my weight. Even my face has changed appearance.

I now heal from cuts/bruises slowly. I've slept from 10 to as much as 16 hours in a day, but over the last few months my sleep has become so disjointed that I can't really tell how much total sleep I'm getting.

I can no longer breath steadily when walking. Each step will cause "shockwaves" that make my insides shake like Jello. My thirst mechanism doesn't seem to work. Swallowing is more difficult, and I frequently experience a choking-cough that happens when saliva is pulled into my windpipe when I breath in, or my sinuses when I breath out. Breathing is more difficult when I'm lying on my left side as opposed to my right. Basically, breathing sometimes takes effort whem I'm at rest, which didn't used to be the case.

And lastly, several times throughout the day, my heart thumps very heavily for a beat or two for no reason. (I believe that my muscle fatigue problem is affecting my heart and causing the warm fatigue-like ache I experience when I attempt to walk normally).

(I believe that I may have a problem with my endocrine system).

I've been researching my fatigue symptoms which can be attributed to one of many things. (For example: Pompe disease, kidney problems, Polymyositis, Hyperkalemia or Hypothyroidism, Multiple sclerosis, Peripheral neuropathy, CKD, COPD, epidural abscess, Cancer, and Systemic Fungal Infection).

I really would appreciate help in finding someone who can go over my medical records to date in an attempt to determine what to look for and hopefully how to address my problem, because I feel my time is running out. Any assistance would be greatly appreciated.

Statenislander

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Laurie, Volunteer Mentor | @roch | Sep 25 2:52pm

@statenislander

Sounds like you have had very rough couple of years. Members on Mayo Connect can give advice and support; but not medical advice.

If you are looking at requesting an appointment a Mayo, you can either self-refer and ask you current provider to refer you.

To submit request, start here: http://mayocl.in/1mtmR63.
You will receive a call within 3 business days to set up a time to talk with an appointment coordinator.

Are located close to a Mayo location (MN, FL, AZ)?

gently | @gently | Sep 25 6:38pm

Statenislander,
I'd suggest that you begin with a cardiac workup. Reconsider an ablation.
Cardiac issue can lead to problems far and wide that are more distracting than directive as to cause. Sometimes after addressing one cause all the other parts of the puzzle fall in place. Sometimes there is more than one malady and we have to strike them off one by one. Cardiac problems can be a driver of fatigue.
You should have more than a primary care physician looking at the various aspects of your health.
Best wishes. Keep posting.

statenislander | @statenislander | Sep 25 9:32pm

Unfortunately, I'm in New York, and therefore not close to a Mayo clinic.

I've been keeping cardiologist appointments for years, and I think I took every test they had. No heart problems were ever found until an irregular heartbeat was detected several months after my bout with COVID-19 three years ago.

And since my fatigue(or weakness) started in 2003 I think my heart is unlikely to be the root cause. But I do believe that whatever the cause is, it may be responsible for the irregular heartbeat (since the heart is a muscle) and also the ache in my chest I now tend to get when walking. (Which feels as though I have 50lbs weights attached to my legs).

I've seen a lung doctor, and he found nothing wrong with my lungs. At the rate I'm deteriorating, finding the answer may be up to a coroner.

Thanks.

Statenislander

covidstinks2023 | @covidstinks2023 | Sep 26 7:01am

God Bless You. Have you seen an integrative medicine (eastern medicine) doctor....one that thinks outside the box? Perhaps they could do a blood work up that western medicine (primary care) doctors do not do. It will be out of pocket for you...but, you may very well get some answers.

Some of your symptoms sound like chronic fatigue syndrome....that is diagnosed by your symptoms and by ruling out other maladies with bloodwork. If this is autoimmune related, sometimes it is very hard to get a diagnosis from a Rheumatologist. Also, extreme fatigue can be caused by calcium buildup in the heart. Western doctors do not normally check this....but eastern doctors will refer you out for a calcium score test ct scan of the heart.

I know this is a lot of recommendations...just want you to feel better. Is there an Infectious Disease doctor in your area that you could go too? They also tend to think outside of the box.

Praying much for you right now. It sounds like you have a perfect storm going on and the upper respiratory infection set it all in motion. I'm sorry that you haven't gotten a diagnosis. I know this is discouraging. I believe there is help out there for you somewhere. Blessings & Prayers....

Teresa, Volunteer Mentor | @hopeful33250 | Sep 26 10:40am

Hello @statenislander

I would like to join others who have responded to your post. I can understand your discouragement. Having symptoms of this kind of fatigue can be debilitating. As others have mentioned, it would be good for you to obtain a second opinion. This second opinion would best be with a multi-disciplinary medical center.

If you are not near a Mayo facility, you might consider a university medical center. These types of health care centers are geared towards research and often provide answers for difficult-to-diagnose health issues.

Many of us on Connect, have had difficult to diagnose health issues and in order to find a answer it is important to keep searching. Do you have a university medical school in your area?

colely | @colely | Sep 26 1:56pm

I have gone through something similar all my life. I think you probably have multiple problems, with multiple solutions. I have a genetic syndrome, I have chronic EBV, I have chemical sensitivities, I have a Chiari Malformation that is affecting me. I have high levels of Chlordane, that is affecting my immune system, along with the Epstein Barr virus. I don't know where you live, but you need to see an immunolgist, that is also aware of chemical sensitivities. Please call the office of Dr. Alan S. Levin, I Incline Village NV. Ask for a referral to a doctor near you, if you can't see him. There are good doctors in NY. BTW, do you feel better if you can go to a clean air environment?

statenislander | @statenislander | Sep 27 2:10pm

I'm not in a position to pay out of pocket medical expenses. For the last two years I've only worked two days a week, and my problem keeps me from working a full schedule. So that has put me in a difficult financial position as it is.

I have a few issues I haven't mentioned, but since they manifested years after that day in September 2003 when my fatigue (or weakness) started, I don't consider them primary causes of the problem.

My bout with COVID-19 seems to have caused me memory problems. Especially short term memory problems. So, I can't remember everything that was done as far as medical tests over the las couple of years, but the idea was to get my records and have the right individual pore over them to determine the next steps.

So I have to figure out how to find an "Integrative medicine" or "Infectious Disease" doctor, and determine if my medical insurance will cover that.

Here on Staten Island most of my appointments have been with medicine practitioners associated with Staten Island University hospital. (But I'm a 25 minute ferry ride from Manhattan). I'm not sure what a university medical school is.

I'm also not sure what going to a "clean air environment" entails, but I guess I'll have to look into finding an Immunolgist, that is knowledgeable about chemical sensitivities.

Thanks.

Statenislander

samcal9977zz | @samcal9977zz | Sep 27 7:16pm

I have been in support groups for chronic illness.

I took down some info related to Chronic Fatigue / M.E.

Some M.E. / Chronic Fatigue Information Resources - 11
Links
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General Information for Patients with M.E.
from the M.E. Pedia
https://me-pedia.org/wiki/Primer_for_patients
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to generally inform doctors about M.E.
M.E. Resources for Doctors, Therapists, etc.
M.E. Primer
Full version and 2-page summary
1) Full Primer ---- Here’s the full version, big primer for clinicians. It includes a bibliography.
MYALGIC ENCEPHALOMYELITIS – Adult & Paediatric: International Consensus Primer for Medical Practitioners
https://www.me-international.org/uploads/1/2/7/6/127602984/me_icprimer_20 12.pdf?fbclid=IwAR31EagmS2Zes8xU_mTihby4fICyva_ZuM9_xGH6OTezV 1HWFGmQAuslcsU
++++++++
2) Summary of Primer Here’s a 2-page summary for doctors drawn from the ME Primer.
A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)
https://drive.google.com/file/d/1gbi18Z6k1csGNIID_UAMqrJMuXwbAvyr/vie w?fbclid=IwAR3yte-vcbnvlVF15btHVWiv4k4iVfqme7Wp2vYDvynwdHMpG PRe3azE3nA
+++++++++++++++++++++++++++++++++++++++++++
3) Info aimed at healthcare providers:
https://www.meaction.net/learn/healthcare-providers/
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General Websites
1) https://www.meaction.net
+++++++++++++++++++++++++++++++++
2) https://me-pedia.org
+++++++++++++++++++++++++++++++++++
3) Solve ME/CFS Initiative (Solve M.E.)
https://solvecfs.org/
+++++++++++++++++++++++++++
Article on Getting Disability - from the M.E. Action Website (article has a cutesy title, but solid information...)
https://www.meaction.net/2017/04/17/the-sleepy-girl-guide-to-social-security-d isability-u-s/
++++++++++++++++++++++++++++++++
from the ME Action website:
Doctor Finder...
https://www.meaction.net/resources/find-your-doctor/
++++++++++++++++++++++++++++++++
M.E. - - - - - Support and Crisis Resources...
https://www.meaction.net/2018/12/20/need-help-support-and-crisis-resources/ ?fbclid=IwAR2vgq4TAGTdupkHuBwyd2hUL9K-SoYNnJDLrjc79Uw7il6pN5 lxlvce1nY
+++++++++++++++++++
Primer for family, friends and care providers
https://me-pedia.org/wiki/Primer_for_family,_friends_and_care_providers +++++++++++++++++++++++++++++++

samcal9977zz | @samcal9977zz | Sep 27 7:18pm

One more

New York State Chapter of M.E. Action:
https://www.meaction.net/countries/usa/state-chapters/new-york/

rahrah | @rahrah | Oct 11 6:18pm

I'm so sorry you've been dealing with this. Your story sounds very similar to mine in a lot of ways, and I know how difficult, frustrating and frightening it can be. I spent decades seeing dozens of doctors, just trying to get anyone to take me seriously and to tell me what was wrong with me, let alone help me. Eventually I learned that I had CFS, but it was still years before I found anyone who knew what to do with that diagnosis, and even now it's not a simple path, unfortunately. I would suggest looking into doctors who practice functional medicine. They are not in network with insurance, so there is additional cost, but it's worth it. They take a whole-person approach, and they are more likely to know how to tackle complex cases like this. Even starting there, it can still be hard to find someone who's a good fit. But it is a place to start. I hope you find answers (and reason to hope) soon.