Surviving Sarcoidosis Battles and Forging Ahead Without Answers
Getting out of bed in the mornings has become an adventure. Even if I remember to guzzle water and rise slowly to prevent the onset of lightheadedness from my postural orthostatic tachycardia syndrome, there’s my trick leg to deal with.
Several months ago, my left leg began checking out from its duties and going numb from the knee down. On the mornings when I forget to take the numbness into account, I nearly take a tumble when my foot hits the floor.
This month, I traveled to the Cleveland Clinic for answers, but like many of the symptoms that I live with as a result of my sarcoidosis, I was given a good news, bad news report. The good news is that an electromyography (EMG) revealed no abnormalities. The bad news is that they have no idea why my leg goes numb. So the numb leg, like many other symptoms, will become just another “new normal” in my health story.
Thankful, but frustrated
Sarcoidosis has been carving its unpredictable path through my life for nearly two decades, leaving multiple unexplained symptoms in its wake. My fatigue has stubbornly persisted whether the disease is active or in remission, a symptom shared by an estimated 50-70 percent of others with sarcoidosis. Muscle and joint pain, cognitive issues, and random numbness of various other body parts also refuse to budge from my wheelhouse of symptoms — which also fall in the “good news, bad news” category when causes are pursued.
Muscle cramps in my feet, legs, and hands have worsened recently — I haven’t experienced this level of symptoms since I took courses of prednisone. During my EMG, multiple charley horses stampeded into my calves, as if deciding that flexing those muscles with a needle stuck in them wasn’t sufficiently uncomfortable. I’m thankful that the diagnostic tests didn’t show abnormalities. But it’s frustrating when answers can’t be found for the various symptoms that have become a part of my daily life.
Living without answers
When readers leave comments seeking answers to their own battles with sarcoidosis, I wish I had responses for them. Despite my lengthy battle with the disease, I’m no more knowledgeable about where it’s headed or what it will bring than when I received my diagnosis. But I am encouraged; we may not have answers, but we are still here.
We are surviving and battling, whether we have just stepped into the ring or have been going rounds with sarcoidosis for 20-plus years like some readers. I hope that we can learn from each other through our shared experiences and find answers to the many questions currently eluding our doctors.
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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Catherine
Hi,
I recognized some symptoms. May I ask you if you need oxygen? I have it 13 years now, and my breath is to short to do whatever. I sleep very much, sometimes almost 16 hours . Yes, every day is an adventure, only never a nice one. Something new occurs all the time. Courage to all that suffer from this awful desease.
Athena Merritt
Hi Catherine, no I don't need oxygen. Thanks for commenting, it always helps to hear others understand the many battles sarcoidosis throws at us. Wishing you strength on your journey.
Catherine Bogaerts
Thx; and all the best!
Ingrid
Hi Catherine,
I have had neurosarcoidosis for the past 15 years. About 2 years ago I was sleeping 9.5 to 10 hours a night, would get up, and 2 hours later be deathly tired again, suffering from brain fog through the day. I also struggled getting enough oxygen when breathing, always gasping for breathe. After seeing a neurologist for this problem, I even saw a pulmonologist; from a lung scan my lungs are clear. All types of medication, even for asthma, had no effect, he had even suggested using oxygen while sleeping, but the type of machine that would regulate breathing in AND out for the patient. Until he told me that I looked very pale, and even my lung scan showed this palour. I was put on an iron supplement for about a year. This helped immensely. I'm breathing normally now, and only need 8 hours' sleep to cope through the day.
Have your blood iron level (and vitamin B levels) checked - don't self-diagnose, because I've seen that too much iron and vitamin B have severe side-effects too.
Good luck, I hope you feel better soon. No one can live like that.
Athena Merritt
Thank you! I really appreciate you sharing this with me and will definitely have both checked!
lisa
thankyou for sharing the valuable information.
Athena Merritt
You're welcome Lisa. Thank you so much for reading and taking the time to leave a comment!
Kerry Wong
Hi Athena,
I hate to be another one of those "have you considered ..." people, but I've been living with symptom uncertainty for about 12 years, diagnosed with Sarc just 4 years ago & soooooo relate to your story. I also get that numbness in my hands & feet (& legs from knee down) - have they considered Small Fiber Neuropathy? It's fairly common in pts with Sarc, but I don't think it would show with an EMG - it's typically diagnosed with a biopsy (a few tiny ones at upper & lower parts of the leg). I had to fight my neurologist to get him to do it, and sure enough the report came back positive. It's definitely something with at least looking into/talking to your doc about.
Hope you get some answers ... and relief!
Athena Merritt
Hi Kerry,
Thanks so much for reaching out to me. Yes, I had a QSART performed in 2011, which showed Small Fiber Neuropathy and a thermoregulatory sweat test in 2016 which determined the same. I'm headed back to Cleveland this week to follow up on the issue and others.
Doreen Casey
Thanks for sharing. I have many of those symptoms. I wad diagnosed with small fiber neuropathy through biopsies, which is caused by sarc. This is damage to small fiber nerves.
Athena Merritt
You're welcome. Thanks so much for commenting and sharing your own experience. I was diagnosed with small fiber neuropathy as well in 2011. I get numbness throughout my body, not just in the affected areas. I'm headed back to Cleveland this week in hope of answers for that issue and others.
Carrie
My husband is dealing with with this as well. He has pulmonary sarcoidosis. He can’t stand without getting dizzy and at 52 is basically residing to sitting all weekend because of his dizziness. Oddly he had a very surprising stroke in Oct. He took prednisone for 4 months and it pretty much shut his system down - blood pressure super low, cold all of the time (we live in Florida!) and not heart racing when he stands (POTS likely).
We have a small child and we are trying to get help for him. Anyone relate to these symptoms?
Athena Merritt
Sarcoidosis is frustrating because it often leaves us with more questions than answers when it comes to symptoms we experience. I hope physicians are able to get to the root cause of your husband’s symptoms soon. Has your husband had any testing to determine if he has POTS? The dizziness upon standing, low blood pressure, etc. are among the symptoms that I experience which are related to my POTS.
Greg Prince
I'm really curious if some of those suffering with sarcoid have targeted their diet as a possible cause. I have had a similar experience with the first 2 years of living with sarcoid. Plenty of tests that apparently seem to contain good news however existing symptoms along with new ones just seem to persist. I began to realize that consultations with specialists in different fields (for example a respirologist/neurologist) never seemed to acknowledge anything unrelated to their field of expertise. They focus solely on the disease as it relates to them. To find the cause I felt a more holistic approach would be more effective. I started by compiling every symptom, even little things that I may not have realized could be related. In my case I even noted that although "regular" my stools were not healthy according to chart I found. To get to the point I started experimenting with diet changes. The goal was not to eliminate foods or to make a permanent lifestyle change. The goal was to heal the one component of the body that could be impacting all the others. If your gut isn't functioning properly; The rest of your body is going to suffer the impact. I'm not going to say its been 100% effective and I no longer suffer however I feel as though I have a path to recovery. I'm not a nutritionist and I don't want to sell anyone anything. I encourage those suffering to try to simply stay away from processed foods. If you like chicken, buy a whole chicken instead of Mcdonalds chicken nuggets. If it has a label, at least read it first, better yet pick the items that dont need labels. Apples don't have labels... its an apple...it contains apple as nature intended.
Athena Merritt
Thank you for taking the time to share your approach to battling sarcoidosis. I agree a healthy diet helps, as does keeping a diary of symptoms (when they occur/worsen) to determine possible triggers that could be food-related or otherwise.
Whitney Bodine
I completely agree with Greg.
I was diagnosed in June 2019. I radically changed my diet and followed an anti inflammatory diet, eliminated sugar, processed food, gluten, soy and dairy along with some other foods. All the bloat went away, I lost over 30 pounds, my joints felt way way better. Everything improved. Then covid landed and I freaked out and went off the rails. I started enjoying cocktails again and sugar. And I feel like complete crap. The food link is real my friends.
Magda
Hi Athena,
I can definitely relate to what you are writing. Since the beginning of my diagnosis in April 2018 I’ve had so many symptoms that doctors cannot explain. (The sarco is primarily in my lungs, but the symptoms are all over). The ‘newest’ one is that I’ve had low grade fever every day since the beginning of March, accompanied with fatigue. Doctor says there’s no way the fever could be a result of the sarcoidosis, because my blood work seems to be fine.. It’s very frustrating. For the sake of my sanity I just try to accept things as they come, because being angry or worried just makes me feel more sick :(
And yes, I am also grateful that the SIL2 and lung test seem to be fine at the moment!
Lorraine
I have the same symptoms along with low grade fever pretty much all the time as well as fatigue. Cramps in calves, and irregular bowel, GI tract issues. After having a colonoscopy I was told the only problem they saw was inflammation. I began taking probiotics and it helped somewhat , but still have pain and GI issues occasionally, at,east a few times per month.
My sarcoidosis was triggered while living in an apartment that had black mold. Of course I couldn’t see it until I moved and it was under suitcases I has stored in a space in the unventilated bathroom, also he did not run dehumidifier in the dirt basement. That’s when I began to get very sick and was sent for testing. Enlarged lymph nodes, which led to “monitoring” for lymphoma. Tests for every kind of disease imaginable but it wasn’t until after a visit to John Hopkins, who recommended a Pet Scan, that lead to a biopsy of my lymph node that it was confirmed sarcoidosis. My sister also has pulmonary sarcoidosis which I had told the first doctor I visited, later to find there is a genetic factor. It has been the worst 5 years of my life. I was always a very active person and spent a lot of time with my grandchildren being very active. Now I have become isolated, tired all the time, and can never make plans, or RSVP for anything because I never know if I will be able to make it. I spend most of my time in bed which also increases the depression factor that is another sarcoidosis symptom. I rarely see the doctors anymore because besides living on prednisone there is nothing they can do. I recently had a spinal tap and was confirmed that I also have neurosarcoidosis. It affects the nervous system in various ways depending on where the inflammation occurs. To say the least, I pray every day they will find a cure, or at least find out what causes it, which is still unknown. God bless all of you, my fellow sufferers of this disease. I have found over the counter help for my leg cramps called Hyland’s Leg Cramps PM. I take the PM because I usually get the cramps at night and they seem to work better than the regular daytime ones. Heat pads, icing for inflammation and trying to get out for a walk whenever I do have energy. I recently was informed that marijuana has proved to be helpful and was approved to use medical marijuana and received a card to be able to purchase. It has helped more than anything with pain and fatigue. If you can get a copy of a magazine from Life magazine that was totally dedicated to the medicinal attributes of marijuana, especially for inflammatory diseases and immune problems it is very informative.
Good luck to all out there who suffer from this incurable disease.
Magda
Hi Athena,
I can definitely relate to what you are writing. Since the beginning of my diagnosis in April 2018 I’ve had so many symptoms that doctors cannot explain. (The sarco is primarily in my lungs, but the symptoms are all over). The ‘newest’ one is that I’ve had low grade fever every day since the beginning of March, accompanied with fatigue. Doctor says there’s no way the fever could be a result of the sarcoidosis, because my blood work seems to be fine.. It’s very frustrating. For the sake of my sanity I just try to accept things as they come, because being angry or worried just makes me feel more sick :(
And yes, I am also grateful that the SIL2 and lung test seem to be fine at the moment! The good and the bad..
Athena Merritt
So true, you’ve summed up life with sarcoidosis perfectly! Hang in there. I hope you get some answers. Stay safe.
Lorraine Spooner
Correction to prior post, the article about marijuana benefits for sarcoidosis is in the Time magazine. I apologize for the mistake. The entire issue was dedicated to the subject. I recommend reading it. I read anything and everything I can to try to get help.
Barb
Hello, i also experience numbness
In my hands , muscle spasm In my lower extremities. Prior to
MY diagnosis I had been experiencing these symptoms. I go to the Cleveland clinic for my monthly infusions, however nothing helps the spasms . In fact it’s even worse . Reading these comments makes me realize I’m not alone . Initially I had thought I had MS , I was falling . Doing much better, no falls.
MARTIN SIMPSON
Hi Athena, is prednisone the only medicine that you tried? I have been on prednisone for 3 months now and I am not sure if I am getting better or not....I have numbness in my face and eyeball on the left side, my hands are constantly aching and my legs cramp up all night long.........is there another medication that you have tried that works better than prednisone?