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AliH

New member
Joined
Oct 1, 2013
Messages
6
Diagnosis
09/2013
Country
Uk
State
Surrey
Hi folks, I'm newly diagnosed and frankly a bit down about it as it can't be cured. Usually it's as simple as taking a pill and you will start to feel better! I suffer with aching/swollen feeling ankles, feet, hands and shoulders but also have pain in my back. I am just exhausted and seem to go though a few good days then a few bad days, very up and down. What symptoms do you experience? How do you explain what fibromyalgia is? It's so hard when trying to juggle a full time job and a young family... Any helpful tips? I've tried hot baths, relaxation apps such as headspace, both help but not for long! Off to my GP tomorrow but they don't seem very sympathetic!
 

mweber

Active member
Joined
May 7, 2013
Messages
57
Diagnosis
00/0000
Country
USA
State
Pennsylvania
Hi AliH,
I was diagnosed last year, work, and have 3 young children. My biggest symptoms are my back and NECK! I hate my neck. It just throbs all day, I can't fully utilize it, and sometimes causes me to have migraines. As for my back, I get knots and spasms frequently. I take a slew of meds...Savella, Gabapentin, and Celebrex along with Tramadol for break through pain. I also get trigger point injections 2 x per week. Unfortunately, they cannot give them to me in my neck because of the lymph nodes. Compared to a year ago, I've made significant improvement, but I will never feel like I did. I used to be an avid runner and have run 4 marathons, and now I can barely walk a mile. It's a struggle to do laundry and other things around the house. I hope you find some relief.
 

AliH

New member
Joined
Oct 1, 2013
Messages
6
Diagnosis
09/2013
Country
Uk
State
Surrey
My ankles hurt the most and sometimes I struggle to walk. How do you explain the condition to others who don't understand what you are going through? I say it feels like I have the flu but without the flu! Not sure it's the best description! I also forget things that I have just said/been told, does anyone else experience memory loss?
 

mweber

Active member
Joined
May 7, 2013
Messages
57
Diagnosis
00/0000
Country
USA
State
Pennsylvania
I often say that....I feel achy all the time like I have the flu, but it's not the flu. I don't seem to notice any memory loss though....Have you tried any medications?
 

AliH

New member
Joined
Oct 1, 2013
Messages
6
Diagnosis
09/2013
Country
Uk
State
Surrey
No meds yet, off to the docs tonight but reluctant to go on anything as have just come off anti depressants for postnatal depression
 

FiGhTn4LiFe

Active member
Joined
Sep 12, 2013
Messages
44
Diagnosis
09/2006
Country
US
State
PA
Mine started primarily in my shoulders. (I also have Cervical Kyphosis and my C1 and C2 vertebra are twisted as the result of two separate neck injuries, so I always have neck pain that ranges from a 4-5 one day to a 7-8 on others. I was diagnosed with the FM within a year of the second injury.) Anyway, over the years it (the FM) has migrated to every part of me at one time or another. Thumbs, knees, toes, hips (the triggers on my hips are worst), spasms in the back of my thighs, and Neuropathy in my back muscles which makes me sick to my stomach. The Rheumy that diagnosed me said it's not progressive. He lied.

Sorry for the gloomy post. Not one of my better days. I hope you feel better soon!
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi Ali. I've been suffering since I was a teen, but was diagnosed quite recently... a couple of years back. But sometimes it feels like it just happened yesterday. I no longer try to explain what fibro is to anyone, unless they ask me. If they ask me, I just told them I have fibro, and I feel very fatigued most of the time... I suffer from chronic pain in several parts of my body among other things. They usually understand it when I say it like that. I'm using medical marijuana to treat the pain, it makes things easier to be honest... and I really don't like the nasty side effects most of the medications the doctor wanted to give have on most people. I'm already taking meds for other things, so no thanks.

I'm working from home now, I have no choice! The only advice I can give you now is to always do your own research when your doctor puts you on a medication. Sometimes doctors don't tell you all the truth, and you need to dig deeper in order to get more info on certan medication.
 

MizzDeeDee

Distinguished member
Joined
Sep 24, 2013
Messages
129
Diagnosis
01/2009
Country
us
State
Va
My biggest issue has always been my knees. For some reason they are always the first thing to start hurting. My hips hurt a lot, and so does the back of my neck. The exhaustion is always a constant symptom. I'm more often tired than fully awake.

I actually stay home with my daughter. I don't know if I could work a full time job anymore. I had to quit when I first became ill with fibro and a few other things. I don't think I could juggle work and take care of my home and child. I think something would suffer.

I actually tend to not explain what it is to people. They don't get it and some people think it's imaginary. I just tell them I'm in constant pain if they press. As for doctors, it's a hit and miss with them. Sometimes you'll find a great doctor that will offer a lot of support, and sometimes you find ones that seem to care very little.

The best advice that I can give you is to make sure to be your own advocate. If you're not getting help from your doctor, then go to another. If your medications aren't working, speak up. You are your number one priority.
 

nhsososo4

Member
Joined
Oct 4, 2013
Messages
16
Diagnosis
06/1995
Country
RSA
State
Western Cape
Fibromyalgia is one of the rare disorders there is still not much information on its especially in third world countries. Its unfortunate where I come from if a disease/disorder is not known then its something that has to do with witches.

My aunt is suffer of this disorder and it took her years to be diagnosed because instead of going to real doctors she would go to traditional healers up until they milked her dry. Then she finally gave inn and went to a medical doctor and that was the best decision she could have made for herself. She suffers from a variety of symptoms, such as muscle pain where she gets spasms and then the muscles tighten. She has also complained a lot about not being able to sleep and because of that she can not concentrate most of the time.

These are just a few that she is forever complaining about but at least the medication given to her I must say has really calmed the whole situation down.
 
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