Invisible Illness. What does it feel like?
So I have an invisible illness...
My Invisible Illness is almost definitely Fibromyalgia with the possibility of other disorders. My first appointment to discuss what I had been going through happened in June, see my first post on the possible cause and beginning stages of the illness: I'm not crazy...
As I mentioned in that post, it took me a while once my new insurance was in place to make the correct appointments. I was scared. I was scared it was going to be something worse than Fibro (short for Fibromyalgia).
I track all my symptoms, supplements, & medications in a google drive doc so I can always access it and add anything needed. Since I now forget everything, this is great. I then just print it out and bring it to the doctor. I think I was just scared to find out a definite reason for my symptoms. When you are sick and you don't understand why; you tend to read a lot online. The articles and papers you read normally tend to focus on the negatives. I'm still paranoid that I have cancer or some other more serious disease. I have an appointment on Tuesday with the Rheumatologist so I'm hopeful that will bring some answers. I found that Pinterest is the best place to look for resources and helpful tips about Fibro.
Symptoms: What do I feel?
It started with just being tired all the time. After the wedding in February, it seemed I never felt normal. The first sign that manifested was that I was getting over 8 hours of sleep a night and still was never refreshed. I was working everyday during the summer (even weekends) which was adding to the fatigue. I had never been someone who needed much sleep to be productive. I could get 4 hours and you would never know. That quickly vanished and I needed sleep whenever I could get it in.Then came the exhaustion in my body. At first it wasn't that intense, I thought it had just been due to my lack of exercise and weight gain. As time continued it worsened, at the start of June it reached the point where it is now. I don't know that you can truly understand what this means without feeling it, but I will attempt.
It feels like a Gravitron ride that never stops.
This exhaustion came from deep in my muscles. My limbs would be too tired to use, stairs and quick walking were issues. Sometimes my arms/legs will go numb from a normal sitting position. I am weak when I used to be strong. I have trouble opening jars. I feel like I have aged 50 years. I've always been very independent and sadly I need help often now. It's definitely been a difficult transition but I don't really have a say, my body is going to do what it wants.
Next on the list was the soreness!
This was like I've never felt in my life, in every single part of my body. It felt like I had completed a full body workout the last several days ...which would be impossible in my current state. The soreness is worst when I wake and at the end of the night. It aches from your muscles and joints. Walking down a set of stairs is painful, getting up out of a chair is painful, pretty much living a normal life creates pain, exhaustion, and soreness. The worst part is it never goes away. There are times when I'm feeling better than others but there are also days of worst pain. I have a new normal that I am still adjusting to.
The full blown pain came in June. I mostly feel it in my neck, lower back, knees and ankles (Though is can be felt in all areas.) The different pains are weird, random, and varying in degree. I get these needle like pin pricks with stabbing pain which feels like getting a needle pushed into your skin that makes my body jerk in reaction. It is a jabbing painful sensation that happens random times and places in your body. My pain comes in many ways: stabbing, shooting, throbbing, and aching.
Joints ache, some days I can't even hold up my phone or type because it's more pain than the text is worth. Joints also have these shooting pains sometimes, feels like the inside of your bone in a way. A lot of this is even hard for me, the person experiencing it, to understand.
One of my most hated symptoms is the itching (apparently this is a less common symptom), but unfortunately it's on my list. Scratching does nothing to soothe the itch and sometimes just causes pain. Literally driving me crazy. The itch happens in all different areas but most commonly my feet.
I also experience pelvic pain/pressure similar to a menstrual cramp. Which is annoying but one of the symptoms I often forget about as the severity is way less than everything else.
My feet and hands swell if I've been active over about 15 minutes. After standing for long periods, usually when I'm making dinners, my heels feel like they are being sliced off. It's incredibly painful I immediately have to sit down.
Headaches are more common (I've always gotten more than average). I've had TMJ since I was very little. Wikipedia gives a full explanation here, wikipedia/Temporomandibular Joint. My jaw clicks when I open it, the click is the two bones rubbing together. This pain has worsened with the Fibro as well.
Over the summer I started to notice that I was sweating way more than I was used to. After a little research I realized that it was normal with Fibro. Temperature sensitivity - too cold or too hot. Behind my knees and face would be dripping after only a few minutes being warm or outside. Now that the season is changing I have noticed the sensitivity to the cold. I get shivers and goose bumps so quickly. My body is never a comfortable temperature.
I am barely able to get a good nights sleep. I have trouble falling asleep and staying asleep. All of the symptoms above are what aid in the lack of sleep. We are in the process of replacing our mattress so hopefully that will help in the long run. I get about 3-7 hours of sleep per evening. It is never consecutive because I wake with pain, ache, or having to use the bathroom. After waking during the night, I am often left awake wishing to be back to sleep for 30 minutes up to several hours.
Intestinal issues are an everyday struggle.
Mental fog and forgetfulness: I have moments where in the middle of a conversation I'm blank, all thoughts are cleared and it takes a few secs to mins to regain my thought [or help from Jason as he fills in words in conversation for me <3 ]. I forget everything! I used to remember everything, now I walk out of the house with out something go back in get it then drive down the road and realize I forgot 5 other things. I forget conversations that I've had just a few days ago. It's the opposite of how I used to be and it's so aggravating.
That's most of the stuff that happens on a daily or weekly basis.
The stuff that helps:
(I carry a bag everywhere that has all of these items in it)
The links below are affiliate links, your price will not be effected, though I may make a small commission.
Itching: Capzasin, Fibro Cream
Pains in joints and muscles: Capzasin, Fibro Cream, Icy Hot
Headaches & General Soothing: Eucalyptus Towels
Exercising is difficult and can end up causes more pain than relief so starting very slow with low impact is the best. I've started practicing yoga. So far just about once per week.
Lots and lots of gentle stretching. For me this is the hardest thing to remember to do even though it's so simple. I'm working on it though.
Weight lifting of 5-10lbs and low reps can be beneficial. I just started this last week and I think going to be very beneficial.
Supplements: After researching I have found some supplements that have helped others with fibromyalgia. I think these are helping but I also started them all not long after I quit which took away all of my stress.
- Florastor 250mg
- Citrucel 900mg (a.m.), 900mg (p.m.)
- Fish Oil 300mg (a.m.), 300mg (p.m.)
- Magnesium 500mg
- Melatonin 10mg (p.m.)
- D3 3000IU (was taking 2000IU/day but D was low in blood work so doc increased a 1000IU)
- B12
- Tumeric 538mg
- Folic Acid 400mg
- Ibprofen 400-800mg/day
I also get a massage every other week. I found Cindy at Hand and Stone who is very knowledgeable with Fibro and has been able to really help me. If a masseuse doesn't have experience they can end up leaving you with more pain.
I hope this can help the people who didn't know what Fibro is to understand a little better.
...the future is bright!
xoxo
D.Hord
So I have an invisible illness... For people who do not understand, that means that I have a condition of sorts that does not show on the e...
