Things I should know?

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Things I should know?

Postby Cazzy_Black » Sun Oct 19, 2014 2:47 am

Hello everyone. I am new to the forum and am hoping to become a regular and get to know many of you :)

I was recently diagnosed with fibromyalgia after years of pain. I also have hypermobility syndrome, asthma, urticaria (hives - I am allergic to heat) and Erb's Palsy. Apparently my tender points were 16/18, I have "nondermatomal paresthesia", I am in pain constantly, have a migraine at least 4 times a week and extreme fatigue 24/7.

I have a few questions for fellow sufferers...

16/18 tender points seems quite high. Is this normal?
What is "nondermatomal paresthesia"?
Are the migraines apart of fibromyalgia?
Can my Erb's Palsy play a part in the severity of pain? (Erb's Palsy is basically tearing in the nerves that connect in my neck and arm. I have limited movement in my left arm as I only have 2 out of 5 nerves that are unbroken. Because of that some muscles overwork when I use it and the shoulder is restricted.)

Thanks for taking the time to answer any of these. I have had a hard time finding anyone who shares Erb's and Fibro together and it's not something I expect a lot of people to know. Even my doctor has to go online to read about it as it's quite a rare disability! Xx
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Re: Things I should know?

Postby iblinkin » Sun Oct 19, 2014 5:25 am

Hi Cazzy_Black, here is something i found on the web for you. Also i am going to look into this for myself as this could explain a lot of things for me, for i have had severe trauma to my neck due to several accidents i have had over the years and there has been a lot!
Also, please be careful how you stress yourself over things as that's one of our biggest triggers and remember to smile.. trust me it helps. Oh yeah.. don't worry about your trigger spots as I'm sure there are some people here including myself who have all 18 or more spots and migraines.. i use to have them 24/7 for years and still get them just not for weeks at a time. Yes it can be a part of fibro and keep in mind that fibro has the ability to mimick illnesses and can drive you crazy, just don't react to everything and relax and it will pass. Please keep us updated. :-D

Nondermatomal Paresthesia

Nondermatomal Paresthesia or aching pain in one or both arms may occur as a result of a whiplash injury to the neck. The term “whiplash is not a medical diagnosis, but is the result of soft-tissue trauma to the neck. A whiplash injury occurs as a result of a sudden acceleration or deceleration of the head and neck, the cervical spine. Whiplash injury could cause symptoms lasting for several years after the initial trauma.

For more information, please see

Nondermatomal Paresthesia – – –

Copied from the net.
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Re: Things I should know?

Postby libbiek30 » Sun Oct 19, 2014 9:07 am

Hi ask ur gp if they can refer u for acupuncture. I had it for along time it really helped with pain and got rid of my migrains. Its worth a try. :-D
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Re: Things I should know?

Postby Theresa34 » Sun Oct 19, 2014 11:22 am

When I had my pressure test the rheumy noted I had 11/11. Guess it depends how many they want to test? As d
For the migraines, mine aren't too often thank God. I used to get them every month (pre fibro). It turns out that it was my birth control causing it. It was the extra estrogen so had to change to progesterone only. I still get migraines but they're few and far between now. They do run in my family too. So not sure if they're linked to fibro or not.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Things I should know?

Postby *Lisa* » Sun Oct 19, 2014 7:21 pm

Hi Cazzy,

The Urticaria stood out for me! I also have this and react to pressure! and in some cases the cold or heat not worked that one out yet as seem to come up in a rash when i go from a change in tempreture :crazy: I also get the Angiodemea with it :roll: swelling of the lips/face/ feet & nasal airways :shock:

Not found anyone else yet who has this problem as they connected this with the FM/CFS (or basicly they had no clue why and stuck it under the label IMO) :roll:

Parathesia can also be the tingling of the nerves.

It is very commen to have most tender points active
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Re: Things I should know?

Postby whoami » Sun Oct 19, 2014 7:52 pm

Hi and welcome.

I was going to also say not to worry about the amount of tender points the Dr found. It does not determine that more or less is worse than the other. Everyone is different in how much pain they can handle and how that pain feels to them. Two people could be stimulated with the exact amount and those two people could feel pain in different levels.

I hope you enjoy and find lots of info that helps you , here in our group.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Things I should know?

Postby calipres » Thu Jun 23, 2016 12:05 pm

Firstly @Theresa34, I love the quote in your signature! That is how I feel as well.

When I was first diagnosed, that sensation of tingling and numbness was one of my most common symptoms. I always wasn't aware at the time that it was called paresthesia so I would just say 'my hands are asleep', or 'my leg is asleep'. This was really the only way I could communicate the sensation to my husband.

I find that a few stretching techniques that I have learned from my physiotherapist can sometime lessen the feeling.
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