Fibromyalgia

Don’t Touch Me! I Have Fibromyalgia

Tess

Today I welcome a fellow sufferer to share her story, Teresa/Tessa Smeigh. Tessa is 59 years old and has been fighting Fibromyalgia for more than 6 years.  She suffers a lot from several invisible illnesses and can empathize with people who have them too.

She is an advocate for both physical and mental invisible illnesses. She gives her time to researching these illnesses/disorders in order to help others. You can find her personal blog at Tessa Can Do It!

She also likes to share her faith with daily devotionals.

Don’t Touch Me!

Don’t touch me and I mean exactly that, don’t touch me. Someone not familiar with Fibromyalgia would not understand the cryptic demand not to be touched. That also includes hugs.
I have Fibromyalgia, which was considered a nerve disorder and recently has progressed to being a real disease/disorder and considered neurological. I say real disease because it is finally being found listed in the actual list of published disease/disorders.

A lot of people and that still includes doctors, don’t believe in it.

It is hard to find a doctor for treatment. My primary care doctor doesn’t believe and won’t treat for it or any type of pain. Everyone just blames everything on the Fibromyalgia. I’d like to see the non-believers in my shoes right now while I am having a terrible flare-up. Fibromyalgia ebbs and flows under different stressors.
I have overdone my activity level these last few days and I am paying for it.

Fibromyalgia sometimes requires rest after doing different, even simple, things.

Sometimes I just have to remind myself to limit my activities to prevent a flare-up and many times I just have to rest for days.

Simple things for others, are very difficult for me.

  • Changing my bed is very hard. I put the bottom sheet on and rest, then the top sheet and rest and then the quilt and rest. Once completely done I just have to lie down for several hours.
  •  My doctor wants me to exercise. That is hard for those of us with Fibromyalgia and my orders were to walk just 5 minutes. Surely everyone can do a 5-minute walk, but no, I can’t. It hurts and wears me out.

So when did my personal agony start? Long before I was diagnosed for sure.

  • I was having trouble functioning at work. Couldn’t remember anything. I was constantly asking my supervisors the same old questions and could no longer learn a job as fast as I used to. This is referred to as “Fibro Fog.”
  • I won’t get into a long personal list of what bothers me. It would take several pages to cover it all. I do lose my way driving and forget where I am going and how to get there. This is also a part of “Fibro Fog.” I have a lot of the symptoms listed on many websites and blogs that I constantly research.
  • One day both my back and neck just started hurting. I had to take off work, which was unacceptable at my job. My PCP couldn’t figure it out, he sent me to an orthopedic doctor because I had a pinched nerve in my neck at first and herniated discs in my spine. Pretty close to ½ of my discs were affected (at the time which was 5 1/2 years ago), plus arthritis in all my joints. That was my initial diagnosis.
  • I started noticing pain in just a light touch on the trigger points and around them. This was so painful nobody could touch or hug me. Sometimes my whole body would feel like pins and needles and total pain throughout my whole body.
  • Clothes started hurting from the texture or perhaps static electricity, but mainly due to the pressure on my already sore body. At times the pain would be a 12 on a 10-point pain scale.

I had every test they could think of before they ruled it Fibromyalgia.

I had to find a rheumatologist to get this final diagnosis and someone who would treat me for it. Unfortunately, none of the treatments worked for me. I have no pain medication for it. I’m just using ibuprofen. We have tried steroid shots and physical therapy.

Sometimes I have to turn down friends or family for activities

Activities I might have enjoyed if my body would cooperate. If it is important, recently my grandson graduated, I will do it, but I will pay for it later.

I am going to try a new treatment.

It is a healthy diet and I found a list of good and bad foods for Fibromyalgia and posted that on my blog to help others who may benefit from that. I am working on it now. Just started it so I can’t provide an answer/outcome to anyone. I just say “try it, what do you have to lose?”
I am dedicating my life to Christ and as an advocate for both mental and physical invisible illnesses.
God bless everyone who suffers from Fibromyalgia and I leave you with a “gentle” hug.
Tessa

 

Read more about what Tessa is learning at her personal blog. www.tessacandoit.com {I love that blog name! We can all do it with some encouragement and holding each other up.}  I’ll soon be sharing about nutrition. Tessa’s website, might give us some insight on that since she is beginning the healthy diet road. Let’s all work together to find ways to manage our pain.

Thank you, Tessa, for sharing your story with us. It is so good to connect with others who understand our pain.

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