Dear those who are ongoing tests, in ... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Dear those who are ongoing tests, in middle of a diagnosis or feel something isn't right.... Don't give up.My timeline of events...14 years!

charleyspooniecorn
charleyspooniecorn

(Birthday is 24th may 1994 )

Some of these has not being confirmed to being related to fibromyalgia however I've listed all the symptoms or reasons for seeing the doctors that could have been part of the fibromyalgia diagnosis / early signs of it.

At age 11 ♡ 1 May 2006 - Gait abnormality

Age 13 ♡ 2007 - [D]In-toeing

2007 - 'Growing pains' (I fail to accept this as the pain was constant and severe in most of my cases, I remember how they felt and still get pains like this!)

Age 15 ♡ 2009 - Myofascial pain syndrome (!!!!)

Age 17♡ 10 Apr 2012 - Knee pain

Age 19 ♡ 30 Jun 2014 - Knee pain

Age 20♡ 11 Apr 2016 - Knee pain

18 Oct 2016 - Knee pain

Age 21 ♡ 3 Mar 2017 - Malaise

7 Sep 2017 - Knee pain

Age 23 ♡ 2 Oct 2018 - Flank pain

12 Oct 2018 - Low back pain

23 Nov 2018 - Low back pain

Age 24♡ 2 May 2019 - Chronic low back pain

28 May 2019 - [D]Abdominal pain

9 May 2019 - Abdominal pain

3 Aug 2019 - Low back pain

4 Sep 2019 - Hip pain

10 Sep 2019 - Low back pain

Age 25♡ 9 Jan 2020 - Backache

17 Apr 2020 - Fibromyalgia

14? Years of these pains and I'm still undergoing tests to gain more answers. Just don't give up badgering your health care team / doctors if you feel that something's not right. Have faith in yourself that you know your body and know what's normal. Keep fighting and be strong 💜

I hope this is inspiration to some of you that you are not a burden and you are not being stupid or making it up. It's taken me 14 years to finally get an answer and would break my heart for anyone else to go through what I did.

6 Replies
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Its good to finally get a diagnosis. Took me 20 years. It doesn't help with all the pain but your mindset is better knowing someone finally believes you. On top of fibromyalgia I have M.E. I got sick of hearing ppl say I'm tired too. I felt like a loser. Right now I'm sitting on the couch wishing I could do my dishes. Thing I have learned is I don't have to beat myself up anymore if I can't. Glad you got your diagnosis, sorry it's not curable. Good luck and good fortune to you in your future. Stay safe

Amanda

Julesubu
Julesubu
in reply to acuratalo

Think that’s the biggest challenge, accepting that you can’t do everything or even anything some days.

I work 22.5 hrs now and this wipes me out, Sunday’s are often my most productive day.

Just took long time to realise world wouldn’t end if washing or dishes not done.

Yeah , I've not accepted this yet and always "beat myself up" when I can't do a particular thing though I am learning that it's okay. My hubs helps out more now which is great.

(I'm very independent and hate asking for help)

I've just gone from 40 hours a week to 30 hours, but I only work 7.30 hours on monday and Tuesday , Thursday and Friday. I have an office job but it still wipes me out by Wednesday as I have a lot of thinking to do and a lot of fast typing, remembering where to find stuff and I travel in on the bus where I have a 10 minute walk to bus stop and back home.

I can understand why it's taken so long to realise that though.

I hope you are well and safe

Is your main problem lack of energy or pain? It’s possible to help with lack of energy but pain is considerably more difficult! I have lack of energy at times and this gets followed by pain rather than the other way around; if I can increase my energy levels I don’t crash and burn as quick. I’ve just started using two supplements that help with energy levels, D Ribose which is a type of sugar that naturally occurs in your body and a Total amino acids complex, both are used by athletes to help them recover from strenuous exercise more quickly. It costs about £35 for about 3 months supply so not too expensive. So far so good, I’ve been in the garden today and done some work that I wouldn’t have been able to complete a month ago and not crashed and burned!

Interesting to see Myofascial pain syndrome on your list, I have been diagnosed at one stage with having either that and/or Fibromyalgia; I strongly believe that the two exist together not as separate entities. Most people who have Fibro I am pretty sure experience referred pain which is associated with MFPS more so than Fibro. As the muscles are covered and connected by fascia it stands to reason that there will be a connection between muscles and as fascia tissue is more sensitive than muscle tissue it explains the extent of the pain. Unlike yourself, I was very lucky to have a really great GP who pushed me to get diagnosed and it happened in about 2 years; given that I’m now 68 if my case had have been like yours we might never have found out what was wrong with me 😬

Theres lots of articles to do with Myofasccial Pain and Fibromyalgia being related x

I think my mps developed into fibro as it was never looked into apart from that 1 time

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