Newbie, almost diagnosed...

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Newbie, almost diagnosed...

Postby Zeke's_Mommy » Wed Jan 21, 2015 9:03 pm

Hi all

I'm really looking for somewhere to vent, ask questions and hopefully not feel so unimportant as I do right now.

I am 33, had my first child last year (he is 13 months) and it would seem that his traumatic birth has brought about fibromyalgia. I am currently at the stage where I have seen a rheumatologist, who has said it's more than likely a fibromyalgic condition, due to lack of evidence from the x-ray and mri of anything severe. I have mild hip dysplasia from the pregnancy but this, I am told, should not cause the amount of pain I get. I have now been referred back to my GP with the suggestion of a pain clinic, but it looks as if the rheumatologist is leaving it to the GP to confirm a diagnosis. Not convinced this will happen but we'll see.

My main symptom is pain. Constant and excruciating pain in my hips, back and sometimes legs and feet. I am depressed, but I think this is as a result of being in constant pain rather than a per-cursor to it. I do get a bit of the brain fog thing but it's not severe. I have sudden bouts of severe tiredness, but thankfully not too often.

I struggle with every single thing that I do, work, looking after my son, looking after my house, walking etc etc. My husband is an understanding person, but I don't think people in general really get how much I'm suffering and that leads to both feelings of guilt (for feeling sorry for myself and frustration (thinking that nobody cares about me).

From the little I have read from other people on the forum, people seem to experience much more of the mental side effects than pain with fibro. I am just in so much pain all the time and sometimes I get sever spasms and then literally cannot move for days. Is this anybody elses experience of fibro or do you think I have something else??

All opinions welcome. Thanks :-)
Zeke's_Mommy
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Re: Newbie, almost diagnosed...

Postby karrier-bag » Wed Jan 21, 2015 10:41 pm

Hi there
I too am new to this and only joined the forum today, I was diagnosed yesterday of having Firbo and like you I suffer pain more than anything else, I have found Devils Claw can help with my hips and elbow pain, valerian for help with sleep and stress and sage for hot sweats, all in tablet form from local health food shop, herbal meds so quite safe.
I take dihydrocodine as my main pain killer, oh some paracetamol and ibuprofen I have had side effects with everything else i have tried, having a good doctor is really important, I think I have found one :) feeling guilty is something i also suffer as I am the main earner and I have only just taken my son (19) on working with me and he really needs me at the moment (we are very specialist vehicle parts suppliers) my wife is self employed and only started her business six months ago, works from home and I feel in the way a lot of the time, i also have a 15 year old daughter who left school and started collage last september so I feel I have to take her and pick her up even though I actually don't, so i totally get how you feel.

I suggest you look into at least valerian as something to help with the stress and sleep, like you i just flop and need to rest, i have found taking a couple in a day or at least one at night has helped.

Can i ask, do you get much or any pain in your elbows? I get from very tender to thumping elbow headaches which is so hurtful, also hips, i can do ten to 15 minutes then have I to rest and now use a stick all the time , i dislocated my right hip badly about 25 years ago and thought the pain was down to that but looks like it is more likely the fibro :-|
Have you got tender spots on chest, elbows, neck, shoulders, knees, lower back there are 9 areas and somewhere on here a chart with all the pain points which they use to determine if you have fibro along with all the other tests and stuff.

Greg
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Re: Newbie, almost diagnosed...

Postby karrier-bag » Wed Jan 21, 2015 10:47 pm

Oh just wanted to add that the rheumatologist has most likely sent you back to your gp to have other tests to rule out any other condition, as it was a rheumatologist yesterday who gave me my confirmation, he asked me questions, I had my wife with me as my portable memory device as she remembers everything and i have bad memory (another fibro trait it seems) and i have had so many tests, scans, x rays over the last six years, it was only december when fibro was even mentioned and only because my wife had been researching, so good luck, you might not have to wait so long to get a confirmation :-D
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Re: Newbie, almost diagnosed...

Postby Zeke's_Mommy » Thu Jan 22, 2015 1:59 pm

Hi Greg

Thank you so much for your response and helpful suggestions. I haven't actually tried anything herbal yet (which is odd because I am a vegan so always in health food shops!) So I will go there today after work. :-)

I don't get elbow pain, but I did have a weird flare up earlier in the year where my fingers and wrists hurt too much to pick things up etc for about 2 weeks. Most of the time though it's really my hips and back that are the worst and I think that's a lot to do with the fact that fibro affects the most worn areas of your body (as I understand it) in which case, I guess if you have a mechanical related job (wasn't sure if you were involved in changing car parts yourself) then perhaps it would explain elbow pain. But then it is such an odd disorder, so who knows.

I have been taking cocodamol and naproxen but naproxen started to severely burn my stomach to the point where I couldn't eat (even with stomach protectors) so I had to stop. Which is a shame because they work better together. I have got most of the tender spots as the rheumatologist tested these in my consultation, but not chest or arms (except shoulders). I think the only test I have remaining is something to do with muscle density or something like that. I've had all manner of blood tests etc. Fingers crossed I don't have to wait as long as you did for a diagnosis. 6 years must have been incredibly difficult. I'm at the end of my first year of pain and I actually cannot remember what not being in pain feels like :(

I'm also in a similar situation work wise to yourself, as my husband has just started his own business in the last 6 months, so my job needs to keep us ticking over until he makes a profit. He's a composer and doing very well but it takes time to get to the big bucks. He's had to give up his full time IT job because I couldn't cope with the baby on my own - which makes me feel terrible and even though he was planning to start his own business, it really wasn't the best time with a new family to take care of. So I think there's guilt there too. It's a horrible predicament.

I just wanted to thank you so much for replying as I was really upset yesterday that nobody had answered my post! :-P

Hoping you have a "good" day

Kellie
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Re: Newbie, almost diagnosed...

Postby denys » Thu Jan 22, 2015 10:16 pm

Hi Kellie and :welcome: to the forum :cow-wave: :cow-wave:
Denys

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