Thanks for joining me! I am an IT engineer based in US. I live with my husband(my pillar of support) and daughter(my hope). I started this blog to share my journey with chronic illness.
I was working full time, driving every day 70 miles, leaving home at 6.15 am and reaching back at 7.00 pm. I was that mom who was taking daughter to all the classes, parks, doing grocery, running errands, keeping up with the house, having get togethers almost every other week that involves extensive Indian cooking. I never asked my body if it wanted to do all that. I had all the energy in the world. I had lot of so called friends around me. I envy that me so much!
2014 & 2015:
Still doing all the above. But my body started telling me that it didn’t like it very much. I ignored what it said! Towards the end of 2015, I did miss Monday work couple of times being tired cooking & entertaining those weekend get togethers with so called friends. That did show in my annual routine blood work that I had elevated RH factor. My PCP asked me to consult a Rheumatologist in November of 2015. I always put myself at the last then.
I finally visited Rheumatologist only in May 2016. I didn’t know before what a Rheumatologist actually does.
By then, I was tired all the time, didn’t feel rested even after sleep, missed work couple of times, slept through in the morning and didn’t have energy to drop my daughter in school, so she has to miss school, she has to be tardy couple of times. I had started cancelling plans that I made with friends. But I did commit to some without knowing if I will be able to make it to the get together. That did upset some people if I asked them “can I switch a dish that I committed to bring for a potluck” because I was tired. I don’t blame them. After all, I didn’t ask my body before I signed up for the potluck with so called friends.
May 2016 – Diagnosis with Fibromyalgia:
I finally met with the Rheumatologist. I told him about the overwhelming fatigue, tiredness, flu-like symptoms, body pain, unrestored sleep. He asked if I knew what auto-immune condition means. I said I have never heard of it before. He said he will run blood work to see if I had any auto-immune condition. On my follow up visit on the lab results he walked me through the extensive test results – Microsomal Antibody, Nuclear Antigen Antibody, Dna Antibody, Cyclic Citrullinated & many more medical jargons. I didn’t really know all these as these were not any IT jargon/coding syntax that I know day in day out. He said I tested “NEGATIVE” on auto-immune disorders. I had mixed feeling to hear that as my symptoms still existed.
He asked me if I knew what “FIBROMYALGIA” is? Little did I know about this word that was going to take over rest of my life. He tested all the 18 fibromyalgia pressure/tender points and I was hurting really bad on almost all of them.
Now what? He said –
- There is no cure for Fibromyalgia.
- There is no known cause for it either.
- There are ways to manage it like taking anti-depressants.
- That does have side effects.
- It can not be stopped suddenly as it will have withdrawal symptoms.
- The dosage might need to be increased time to time as it will stop working.
I opted not to take any anti-depressants.
He did tell me –
- Pain killers like acetaminophen or ibuprofen can do only little help.
- Mild exercise like 15-20 mins of walk will help, if I don’t listen to my body, I will need to pay the price next day.
- Physical/Massage therapy might not always end up with good results rather would worsen it.
His suggestions –
- Quality of life is so important. 70 miles of commute is not worth it. Live closer to where you work and cut down the commute.
- Prioritize and do whatever is best for your body & mind.
- Relaxation techniques like meditation will help.
- Always listen to your body.
I was very upset with the doctor that he didn’t know how to treat this condition. I did go to another rheumatologist for second opinion who was called best of the best. He didn’t even take 5 mins to talk to me as his PA already talked to me. He said its your choice – if you want I can give prescription for anti-depressants. I said – “No Thanks!” and walked away choking.
Downhill but there is hope: Fibromyalgia is a social butterfly with other illnesses/conditions. It likes company. It brought together all these guests in my body without even being invited. Oh wait! I didn’t even invite Fibromyalgia at the first place. Sigh!
Arthritis: I injured my knee doing squats. I had to take pain killers & physical therapy. Orthopedist said I was developing early Osteoarthritis on my knees. I now think twice before doing anything. We moved to a one-level ranch that will help ease the strain on the knees without climbing stairs.
IBS: I started developing weird reactions to almost all the food I take. Milk, wheat, Indian cereals, leafy greens and many more. I read a lot on anti-inflammatory diets, paleo diets, keto diets. I figured what works for me the best. I eat a very small group of food – Berries, nuts, eggs, chicken, rice, few varieties of vegetables, Indian pulses & millets. I don’t go out for team lunches. I don’t eat any snack or occasional food thats in the office. I don’t go out much for get togethers as already the so called friends have faded away. I don’t go with my daughter & husband for many restaurants. I pick & choose and indulge once in a while to keep my sanity. As of now, a typical day diet would be like – coffee/tea with little milk & 2 eggs for breakfast, Handful of almonds with couple of dates for lunch, Berries for evening snack, Chicken/Pulses & Cooked vegetable(raw doesn’t work well), rice/millet(handful) for dinner. Basically I eat for energy & not for taste. Plus drink plenty of water. Nothing else goes inside. But I never complain or fuss when the few remaining good friends invite me over and I will eat what they serve. I have been judged by people, they do make superficial comments on me not eating well just because they have seen me drink a frappuccino once in front of them or eat a full on Indian meal in front on them. I don’t want to take a effort to explain all that I have gone through. I have learnt to grow a thick skin mostly but I do get hurt sometimes. I do listen when people explain about paleo or different diets. I don’t want to look like a know-it-all though day-in day-out I research so much on the related topics.
Raynaud’s symptoms: I started developing Raynaud’s symptoms. I will have cold hands & feet, basically in all extremities. I always wear thick dress pants/jeans, 3/4 sleeve tops, shoes with sock regardless of hot/cold outside temperature to keep Raynaud’s in check.
Sleep apnea: I overlooked the fact about unrestored sleep. It struck me only when my activity tracker told me that I slept only 4 hours in spite of actually hitting the bed for more than ten hours. I got diagnosed with minor sleep apnea. To be honest, I am still not using CPAP mask regularly. Thats one thing I need to work on better. SLEEP is the magic pill for managing Fibromyalgia! Proper sleep does wonders! Early dinner(before 6 pm), hot shower/soaking in tub before sleep, keeping room cold enough with optimal thermostat setting to prevent night sweats, watching my favorite comedy show, occasional melatonin in case if I missed so much sleep – all of these help.
Migraine: I started developing severe migraines. It starts as a throbbing pain in left side of the head, radiates to the back of the head through the shoulders. As it gets severe I can feel the pain through my jaws, cheek bone & to the gums. I know I feel fine the next day. I just have to get through the bad day. Homeopathic, Naturopathic or Allopathic pain relievers helps get through these days.
Vertigo: I started developing a sinus infection from a common cold(Thanks to my daughter for those generous hugs & kisses that she gives while she is sick!). That ended up with severe vertigo. The ENT told me that I had something called as vestibular migraine. Fun!
Periodontal disease: The inflammation of fibromyalgia caused severe inflammation in my gums as well. But this can be kept in check with routine dental visits.
Sciatica & tingling nerve pain, muscle tightness: Time to time I do get back ache due to sciatica. There have been bad episodes of tingling nerve pain especially in my right arm that radiates. Thats when I started cooking smarter and not overusing the right arm for all the chopping & sautéing. The tests with my bone, nerve & muscle all came out normal. All these pain goes away in couple of weeks. I think its again due to the goofy central nervous system of Fibromyalgia. Severe muscle tightness happens if I over work or stress much. Finding a good physical therapist helped. He did dry needling(western form of acupuncture) that gave relief. Its basically acupuncture in the area of pain/tightness rather on the pressure points as in traditional method.
Fatigue: Fatigue took over my life after Fibromyalgia & it sucked out all the energy. I did see a naturopath & a homeopath. I wanted to give it a try on the bunch of vitamins & minerals supplements they suggested. You can find a variety of them in the local health food store. I started taking A-Z of supplements, analyzed the brands and that has worked wonders. You need to give it time(at least couple of months) for all these to show a difference. This helped me overcome fatigue. At a point, I thought these are not needed anymore as I thought I have started managing it. Left some of the supplements for brief period & health went downward spiral. So stick with your supplements to keep your brain & body cells fueled.
Flu-like symptoms & body pain: When I go above & beyond and use up my energy, missing sleep consecutively, taking stress not listening to my body, I end up having flu-like symptoms. When the fibro flare is really bad, the body hurts from head to toe. I can’t describe this enough but only a Fibro warrior can relate to this. I know this will also get better, maybe not tomorrow but in a few.
THERE IS HOPE!!!
What not to tell to a person with chronic illness:
I do welcome people’s suggestions when then really get it what I am going through. But those with superficial comments – Shush!
- I think you need to exercise more – why not try this, this & this.
- I think you need to follow this diet – why not eat this & not that.
- How about trying home remedies?
- You don’t look sick.
- Just suck it up & keep doing more work. You will get used to it.
- You got this because you were not doing much work before.
- The Doctor my friend of friend knows cures everything, Fibromyalgia is no big deal to that doctor, just go see them. Sigh! (I have taken suggestions from people who had first hand experience with the practice & had seen benefits)
Brighter side of having Fibromyalgia:
- We have more family time now. I spend my time & energy with the two most precious people in my world – my husband & my daughter.
- We now have the few best chosen friends & closest relatives around us. They don’t judge me if I cancel plans at the last minute, politely decline invites, not show up at their place for 6 months or not invite them over for a year.
- We pay attention to the environment around us more. Eat healthy, use less toxic household supplies, take care of our indoor & outdoor plants, feed the birds, and enjoy nature!
- As I removed toxic substances & heavy metals around the house, I also did a spring cleaning on the people that didn’t mean anything to me on social media or brought unhappy thoughts.
- I value time more as I don’t know if tomorrow I will be in pain or not. I enjoy the moment to the fullest as much as I can. I want to laugh out loud as much as possible. I want to be helpful to people to the best I can.
- I don’t look sick however crappy I feel inside due to Fibromyalgia.
- You begin cherishing even the smallest things & value people more – all the small jokes & laughs at work, the warmth & smiles people give at work is what it matters the most to keep you going.
If you had been an overachiever or a perfectionist, Chronic illnesses will hurt your ego so much. The truth has to sink in that you have one! You are trying and doing the BEST you can. Its okay for the house to be not clean, dishes not done, laundry not folded or you didn’t cook perfect three meals a day as before. Get household help. I have cleaning people come in every two weeks. Its okay if you are not able to be at work at 7:00 AM as before. Its okay if you don’t know if you need to work from home the next day. Take one day at a time. Share with your colleagues that you have a chronic illness. Those are the people you spend most time of your day. I still can’t write the reason for my WFH day email – there have been multiple times I have typed & deleted – I am working from home today because – “I slept only two hours last night”, ” I am fighting a bad migraine from yesterday”,”I have severe body ache & feel like having a flu ten times”,”I have been dealing with this tingling nerve pain”,”I am tearing up every time I breathe as my neck& back muscles are super tight”. I just end up sending – “I am working from home today”.
It’s worth it!
I make sure I cook my daughter’s favorite meal whenever I am not in pain & have energy to do so. I make sure I go to the movies or things we enjoy doing together with my daughter & my husband when I am not in pain. I make sure I give my 200% at work. After all, I feel like its still worth it with all the pain Fibromyalgia brought into me. I did have a LIFE before Fibromyalgia got me. I am not letting it win. I want to live the BEST I can!
“Being able to walk pain-free is a blessing;
Being able to walk without showing the pain is a skill.” – Kylie McPherson