The Nastiness Of Fibromyalgia…You Are Not Alone

My main reason for this post is I just talked to a dear friend of many years and we had a nice little chat about the affects Fibro has on our lives and the things we have lost through this journey.  So, I wanted to share a little of that with whomever might be kind enough to read this.

Well, my last post did not generate any takers, so possibly this one might be of more interest to some.  I am fairly certain that all of you out there can relate to most of what I have to say and if you haven’t experienced it yet, hold on because you almost certainly will!

Life as I knew it did a complete one-eighty from the time I was “normal” until I started having so many aches and pains.   I quickly learned that my life was never going to be the same ever again.  Life had tossed me this giant obstacle and I did not know how to handle it much understand it.  That’s when I started to read everything about all my symptoms I could get my hands on and found that I was not alone.

Here is a list of what I normally go through on a regular basis/have had in the past and these are just the physical ones (will get into the emotional/psychological ones in a minute). See how many you can check off that apply to you:

1.  Flares

2.  Chronic pain

3.  Hidradenitis Suppurativa, reverse acne of sorts, (very, very painful)

4.  Osteoarthritis in both knees (only thing left is replacement)

5.  Irritable Bowel Syndrome (IBS)

6.  Migraines

7.  Hypothyroidism

8.  Restless Limb Syndrome (RLS)

9. Insomnia (better since I started taking Requip for RLS)

10. Allergies

11. Edema

12. Pain in right hip from stress fracture

13. Lower back pain

14. Hot flashes

15. Overactive Bladder

16. Fatigue

17. Numbness and tingling

18. Dizziness

19. Excessive sweating

20. Unexplained nausea

21. Clumsiness

22. Weight gain

23. Leukocytoclastic Vasculitis, a.k.a. Inflammation and tissue damage of blood vessel walls

24. Intolerance to alcohol

25. Thick mucus excretion (granted being a smoker doesn’t help with this)

26. Bursitis in both hips

27. Unexplained fevers

28. Excessive sleepiness during the day time, fall asleep often and at inappropriate times

29. Bells Palsy

 

Now here is the list of emotional/mental/psychological ones, the ones that can really destroy important aspects of your life………

1.  Depression

2.  Seasonal Affective Disorder (SAD)

3.  Forgetfulness

4.  Anxiety

5.  Irritability

6.  Mood swings

7.  Cognitive problems

8.  Anger outbursts

9.  Isolation

10. Loss of friends

11. Loss of independence

12. Feeling bad that my life turned out this way, even when I know there are people out there who have it much worse than I do

13. Trying to convince people who judge me that maybe if they would educate themselves they would see that it is not “all in my head”

14.  Fighting with Doctor’s to give me a pain medication to use only on days that it is unbearable and they won’t because of fear of addiction

 

Ok, I know there are more but my brain just doesn’t want to seem to delve them up right now.  If you have any of these, please know you are not alone.  They are all real and you are not going crazy!  I have had people call me crazy, different, not who I used to be etc.  They are right, I am far from the person I once was.  I used to be very outgoing and fun to be around.  Fibro changed all that.  I cannot go out and do the things I once enjoyed, I cannot play with my granddaughters like a Nana of 47 years should be able to play with them, I cannot tolerate loud environments, I cannot just drop everything and go with friends when they call, I not longer am able to work since I would miss so many days that an employer couldn’t count on me to be reliable.  Who I was before Fibro is far from who I am now.

 

I have gained over 80+ pounds, there are days that I do not feel up to taking a shower or even bothering to get dressed. I mean why get dressed when all I do is sit around my house because most days I do not feel well enough to do anything but lie around.  There are days I do not want to talk on the phone, I do not want to cook, I was once a very good housekeeper, but not anymore.  I have lost friends or pushed them away because they just don’t seem to get it.  Or I feel like they think it is some kind of competition if they have Fibro also.  I got tired of the, “Oh I feel worse than you, my pain is more than yours, my Mom has it worse than you”, always questioning me and my actions.

 

I get so sick of the implications that just because I don’t look sick, I am not sick.  When did they (those who sit in judgement) get their medical license?  You know they old saying, “I wouldn’t wish that on anyone.”, well I certainly would those folks for just one day!  People like that are what I call ignorant simply because they choose to talk about something they have no clue about.  I say I don’t let all that get to me, but I do.  Just as each of you hide your pain and hurts, I do the same thing and sometimes talk a big talk.  In reality, words can have a dramatic affect on anyone, I don’t care who they are.

I have determined that I will  respond to nay sayers with the following comeback if they tell me I don’t look sick, I’m crazy, it’s all just made up for attention……..”Really, why thank you!  Did you know you have hatefulness and ugliness radiating all around you?  Oh and by the way, what you say to me  does hurt but you know what…if I can survive fibro, I can certainly survive without you in my life.  My self-worth means more to me than having someone like you in drag me down with negativity!  Have a great day, I know I will now!”

 

We must support and encourage each other with or without Fibromyalgia and all that comes along with it!  We are NEVER alone and we will survive!  God bless each of you and may tomorrow be a wonderful day in your life!

 

As ever,

~V~

 

Advertisements

50 comments

  1. OMG i have almost all the symptoms. I too have put on alot of weight with this and at times am ashamed to even go out. I too have days I can’t get into the shower(it’s a bath tub shower) as I can’t even lift my leg to get into it.I used to be a much better house keeper than I am now.My oldest son is staying with me right now(he’s 38) and doesn’t understand about the Fibro nor does he want to. He just says I use it as an excuse.It haelps so much to have these support groups to go to.

  2. i just want to Thank You so much for sharing this very personal, intimate look into your life! i would really appreciate your permission to share this with the people in my life that i need to understand me better b.c. in all the years i`ve had fibro (25 yrs) nobody has described it so perfectly as you… this makes me feel less crazy but sad too as i know how you`re feeling and it`s no picnic.. many thanks again for the share and i wish you Good (or at least the best possible) Health ~ღ k

    1. Kimberly…..Honey, you are more than welcome to share this with anyone you want to! You are not crazy and smile cause we’ll help each other through all the things to come! OKAY? PLease check back often and keep in touch! *HUGE soft Hugs*

  3. In addition to all of what you share here, there is the burden of trying maintain a family & marriage with a husband who cannot or will not try to understand what you’re going through. My ex-husband would get angry with me for feeling miserable some days and not accomplishing much of anything, and as a result I’d feel guilty & ashamed of myself. This led to my divorce a few years ago, and unfortunately, my ex still doesn’t get it. Luckily for me, my kids are awesome and although they don’t understand all of what I go through, they know that I hurt and are so helpful (most of the time).

    1. Amanda……There are so many people who fail to educate themselves and that is their burden to bear, not ours! We can only do so much to try and get someone to understand. Do not feel badly about that, just concentrate on yourself and your children. I’m glad they help you like they do! Kuddos to them!!

  4. I felt like I was reading my life and my inner words this is 95% of my life and my symptoms. sometimes its not what is happening on the outside but what is happening on the inside ….

  5. what a great blog! thank you for this. i’m sorry for the pain you have to bear and am all too familiar with it, being somebody with Fibro myself. this is a disease that is SO VICIOUS and takes away so much and we DO need to support one another. thank you for sharing your story here to help with that process. sending you spoons! 🙂

  6. I read it all Ksnana and i know exactly how u feel i have had this nasty desease since 1987.
    and i agree with u,some people should have to suffer it for a day,then they would believe.
    and for the ones that know i really have aproblem good for them for believing in me,just because i don’t look sick. PMac77 @hotmail.com

    1. It’s a messed up world where we question people about their own bodies! People never cease to amaze me and nothing surprises me much these days! That’s why we all have to stick together and lean on each other for support! Lean all you want my dear! I’m a great listener and love helping folks! Stay strong dear one!

  7. Ah, are we twinnies? I thought I was the only one with alcohol intolerance! What kind of effect does it have on YOU? Me, I have increased pain- I mean the best way to describe it is that it’s like someone cranked up the volume of the pain until I’m ready to scream.

    1. Hi Casey,
      I was one who would go out with friends and have a good time. Now if my husband and I go out, I’ll think I want a drink and I’ll order one and then drink a forth of it and have him drink the rest. I don’t like the taste of it anymore and it ends up making me feel worse. I don’t know why I even try but I guess maybe I think things will change! Ha! I wish you the best day you can have as tomorrow dawns anew! Take care!

  8. I am so glad you wrote this, I have 18 of your top 29, with a few different ones thrown in. And of course, all of the mental/emotional ones thrown in too. I am lucky that I have an understanding, sympathetic, caring husband who pitches in where I fall down. He can clean and cook with the best of them. My mother, on the other hand, though she has terrible arthritis has no sympathy. I lost 15 lbs and my jeans and blouse were loose and she told me I looked pregnant and I better lose some weight! She kept picking, even after I showed her the loose waistband of my jeans. Said my dr would be mad at me for my weight. Actually my dr was PROUD of me! My mom never compliments me, thanks me or feels sympathy for me. It’s always all about her. I had the worst flare of my life and had to take a MethylPrednisolone pack for the first time ever. I could not stand the feeling of a bra on my skin or anything touching my skin. And as my mom is in an Assisted Living home, we had to run all over doing errands for her and taking her to get her hair done, banking, etc. and no thanks from her to my husband who had to take that 37lb wheelchair in and out of the trunk over and over. I know all the stress from her makes my flares worse but there is nothing I can do. I have to take care of her.
    Thank you for your words of encouragement. I will survive!

    1. Awe Sharon, I’m so sorry your mother is the way she is with your situation. When I was first diagnosed, none of my family was supportive. I begged all of them to read the books I had bought and educate themselves. To this day none of them have, but after pleading with them that what I had was not in my head or an act for attention, they finally got it. They all know when I am not good and I am thankful for that.
      PLease know that I am here for you and that others believe you and will support you until your Mother educates herself and realizes the pain you feel is real. Take care of you first and foremost and the heck with her for now. I know you have to take care of her but don’t be sympathetic towards her and her illness if she can’t do the same for you. Give back to her what she gives you good or bad. I know that sounds disrespectful, but what kind of respect is she showing you?!

      Let me know how you are doing would you please! My best to you honey and hang in there!

    1. Thank you Lynn! My only hope is that I can reach out to someone and make a small difference in someones life! Please check back often!

  9. I too suffer from Fibromyalgia, but about 2 months ago after seeing a post how a person I knows tried ACE and had tons of energy and felt great and she has fibro and chronic leukemia, I decided to try it. Wow, is all I know to say…it has helped me tremendously. I am able to work everyday and feel so much more energy. The pain has decreased a lot as well and I feel so much better!! If anyone wants to try, please let me know…Niki’s ACE-Appetite Control & Energy Page is my Facebook page!!

  10. OMG!!!!! Thank you for putting into words i sometimes cant…this is me …so sorry you have to go through this to….soft hugs

    1. You are welcome Tina and I’m hopeful that it helped on some small way! Anytime…I’m always here to talk to! *HUGS*

  11. I hear ya sister and I believe every word!

    BTW ksnana1965? I’m from KS, a Nana And born in 1964 ;0)

    Sent from my iPad

    1. It seems we have more than just Fibro in common! You are just a year older than I and what month would you have been born in? Mine is June. Where about in Kansas are you Kimberly? I am in the north central close to the Nebraska border!

    1. Well, Talissa I’m glad that you now know that there is someone out there who is just like you with a few exceptions. Glad to know I could put it into words for some of you and hope it helped you realize that we are in this together! Warm fuzzies for you today and always!

  12. I am a member of Fibrohaven which brings me great comfort than any family members.i feel for you.. I have two young girls who depend on me. But you are not alone…if I can help in. Anyway just let me know . We are in this together❤Lisa

    1. And the same goes for you Lisa, if I can help you in any way, please do not hesitate to ask! It is nice having people who can relate and understand. Makes this journey much easier to go though! Smile….it makes people wonder what you’re up too!

  13. I had a spinal cord injury which left me with fibromyalgia. I mourned all that I lost, but celebrate all that I have! While the pain, weight gain, and mood swings are very challenging, I fight hard everyday to save what I have left. The very basics of everyday living can be hard, especially when others don’t understand. Have faith and belief in yourself, even through the downs. Life is ever changing, and we learn again how to live within our physical and emotional means!

    1. I totally agree with you Atlene! I wake up every day and thank God he gave me another day to see the wonders of the world and look at the faces of those I love and cherish! I too have learned to live with what I can and cannot do, doesn’t mean I like it. LOL Life gets pretty crazy some days and I go into overload, which for me is not a good day. I seem to fall apart easily and get angry because I can’t manage life the way I once did! May tomorrow be a good day in your life! 🙂

  14. wow. very interesting read. I caught myself nodding as I was reading. I have a wonderfully supportive hubby but I still feel guilty for not being able to do more. Of course he will do everything I ask but sometimes explaining how to do things is more exhausting than just doing it yourself.

    1. I completely understand about wanting to do it yourself, I was just like that for a long time. I have just learned that I don’t need to be so picky and that it’s ok to give a little control to someone else. Not always easy and I find myself biting the ol’ tongue on a regular basis! Soft hugs Tammy!

  15. I also felt like I was reading something I wrote I have saved your article to share with my family. I am an 35year old mother of 6 with my 1st grandson born last October. I wish everyday I could do everything I could 11 years ago. I worked 2 sometimes 3 jobs until my symptoms started now I have a hard time playing with the younger kids and the pain I feel from holding my grandson for more than a few minutes is crazy! I want to sleep and haven’t in so long not at the right times anyhow.

  16. When the fibro started it was as if someone flipped a switch from no pain to constant pain. I once had a high tolerance for pain and was very active until this illness turned my life upside down. I used to have an excellent memory but now I ask the same questions over and over. I feel the fibro fog contributes to my memory issues.

  17. Thanks for sharing! I’ll never understand why some with fibro and other chronic conditions think it gives them bragging rights and that the intent of the game is to one up someone else who is already suffering, Why can’t we just play nice and support one another – we would all do so much better!

  18. I would say i know how you feel but I’m sure you’re sick of hearing that. Im 61 and i know what i have but my doctor says i don’t i live with the same things you do day in and day out i hope you the best and best of luck.

  19. I like so many who replied, have all your symptoms and more-in the past 3 years, its like the old me died and this horrible stranger now rules my lfe-there is no joy or nothing to look forward to-I miss ME so much…most days I just don’t want to live anymore-what is the point?? thank you for this -it is all so familiar-God bless you and all of us.

  20. I’m sorry if i’m being presumptious, people like you and i have been accosted like this by well meaning others in the past, but have you been checked for mastocytosis or mast cell activation disorder or histamine intolerance (the whole spectrum)? You are meeting all the criteria, and these problems are commonly misdiagnosed as fibromyalgia, or are at the very least a factor in fibromyalgia. Mast cell activation disorder is a factor in my symptoms, and they sound similar to yours…the stress fracture of the hip, organic brain syndrome, allergies, intolerance to alcohol, IBS etc. Again, sorry if you have already looked into this.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s