I actually don't think I have Fibromyalgia

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I actually don't think I have Fibromyalgia

Postby Picklepudding » Thu May 02, 2013 12:49 pm

I've spent quite a lot of time since my rheumatology appointment on Monday reading posts on this site. It seems like you all suffer so very badly. Whilst I have days where I feel rotten and I suffer dreadfully with my plantar fasciitis and painful hip, I actually don't think I can possibly have fibro. My life isn't overly affected...I still work full time and look after my 2 children. Walking any distance is a problem but other than that, it's not too bad. I'm fairly tired (especially when I wake up!) but, as I said, I work full time and have 2 young children so, who wouldn't be tired?

I'm wondering if my old Vitamin D and calcium deficiency has returned. I've started taking my supplements again, just in case, and I'm hoping that one of the many many bloodtests that the rheumatologist did was for Vitamin D deficiency.

I'm going to keep reading and posting here whilst I'm waiting for my follow up appointment but I'm fairly certain that the rheumatologist is wrong :fingerscrossed:
Last edited by Picklepudding on Thu May 02, 2013 2:28 pm, edited 1 time in total.
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Re: I actually don't think I have Fibromyalgia

Postby kazza65 » Thu May 02, 2013 1:32 pm

you may only have a mild form of fibro,

If you have got another appointment with your rheumology think you self lucking. I've had on appointment told my that i had fibro and said up your amitriplyne tablets and i will discharge you any problems ring to go back..

Thats the biggest joke going because i've rang and can't get back in to see him.. cos the little hilters say i have to be referred by my doctor who now doesn't believe me in that the doctor told me i have disc bulging because he didn't write it on the letter to my doctors.

I could swear.... BLEEP BLEEP

Then to top it of I've got the bloody ESA sending chuffing forms....

Can see a flare up coming ...............
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Re: I actually don't think I have Fibromyalgia

Postby Picklepudding » Thu May 02, 2013 1:41 pm

Oh crumbs, that's not good.

I've got a follow up appointment for the results of the blood tests and xrays. I've been very lucky with my appointments as I'm not being seen on the NHS. After that, I assume that I'll be referred back to the GP.

Having read the posts on here, it seems that because everyone else suffers so much more than me, maybe I haven't actually got it. That's what I'm hoping anyway as otherwise if it's just a mild case I'm assuming there's the opportunity for it to get worse.

I suppose only time and the blood test and xray results will tell! x
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Re: I actually don't think I have Fibromyalgia

Postby autumnellis » Thu May 02, 2013 1:46 pm

Hi there,
Just wanted to say I was in almost the same situation. My Rheumy diagnosed FM after only seeing me twice. I went on a FM course and from meeting the people there and also reading posts on this forum I realised that my symptoms where not the same. Rather than generalised pain my pain was specific and had root causes. I was tired but have a 14 month old who still doesn't sleep through as well as work, uni and a 9 year old. I wasn't depressed and had no cognitive problems as I have been maintaining high grades at university. I went to my own GP and explained my thinking and he was shocked I had ever been diagnosed with FM. Maybe you could chat to your GP as they may know your history and symptoms better than the Rheumy? I was sent for a second opinion and despite accidentally being sent to the same consultant he agreed that he had given me an incorrect diagnosis and even said that sometimes the Rheumys, including himself, were too quick to diagnose FM as a catch all. I am now waiting for an appointment at the pain clinic and have started a course of physio which is tailored to my specific needs. I think you should talk things through with your GP, make a list of the symptoms that don't fit and ask if you can be given a second opinion. I feel that if I hadn't done this I would be in a much worse place treatment wise and it may help you similarly. Good luck!
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Re: I actually don't think I have Fibromyalgia

Postby painprincess1 » Thu May 02, 2013 2:03 pm

vit D being low is something alot of fibro ppl have.i have low vit D myself. also i have a baby ans 3 teens and i have to keep going everyday. dont be fooled and think u cant have it u can .just be plds for now its mild and we all pray it stays that way for u.
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Re: I actually don't think I have Fibromyalgia

Postby FluppyPuffy » Thu May 02, 2013 2:34 pm

It's quite usual after you've been told you have FM to think that it could well be something else. In the odd case, it can turn out to be another problem, but in most cases it is FM and you need to give yourself some time to let the dx sink in and get used to living with it.

FM affects us all so very differently in all ways. Some have more physical problems, some find the emotional/psychological side difficult to deal with, and the levels of severity we each experience are very different, from those who have quite mild symptoms thru to those who are affected to a much more severe degree. And that's before we start going thru the different symptoms we each have :facepalm: :facepalm: :facepalm: :facepalm:

If your previous Vit D and calcium problem has returned, it should show up in the blood test results that you're waiting for if it was one of the ones requested. And if it is this deficiency that is responsible for how you feel, treating the problem should hopefully show an improvement in things for you. As has been said tho, these deficiencies are quite common amongst FMers, so it's also possible that a combination of both problems could be behind things.

Another possible reason for you thinking that it maybe something else is denial :yikes: :yikes: :yikes: When we are told we have FM, there are a number of stages that we tend to go thru before we finally accept that it is part of our lives. This linky explains about some of them viewtopic.php?f=2&t=10653

If you're still unsure about things, and you can't wait until your next rheumy appt, you could always see your GP and talk things over to see what they think.
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Re: I actually don't think I have Fibromyalgia

Postby LouLou » Thu May 02, 2013 2:54 pm

Hi Pickle

FM is so different for each of us as the others have posted, you may have mild FM? I have a diagnosis of FM but the pain I experience is no where near as bad as some people on here. I too work full time (30 hours a week) and I can now manage to work a full week whereas a year and a half ago I couldn't even do a full day.

I do gentle exercise, walks, can pop to the shops, drive short distances etc but I still have to take things easy and watch what I do. I am in pain 24/7, it's always there it's just the severity of it that changes. I get days where it is so bad I have to stay off work and rest and this can last from 24 hours to 2 weeks for me and is knows on here as a flare. When I have a flare it completely floors me and I just have to stop.

Some people on here experience times where their pain is manageable and can get on with things, and there are others who can't work at all, need help walking etc we are all so different.

I had a really dangerously low amount of Vit D last year and my GP thought this was adding to my pain so I had to take supplements to build it back up. It made no difference in my pain but I can see why you are linking the 2.

I would do what Fluppy has suggested and have a chat with your rheumy/gp and express your concerns/doubts. I find it helps me to write a list of what I want to ask/talk about before an appointment as I usually always forget something lol.
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Re: I actually don't think I have Fibromyalgia

Postby Picklepudding » Thu May 02, 2013 4:06 pm

Thanks everyone. I've just received a copy of the rheumy's letter to my GP. It says that I was 'quite markedly tender over most if not quite all the classical fibromyalgia tender points' . It then goes on to say 'although psoriatic spondyloarthritis in the form of palindromic rheumatism would be high up on the list of differential diagnoses,I suspect her symptoms are in fact due to fibromyalgia'

It then suggests exercise and amytriptyline. Unfortunately it doesn't list what blood tests have been done, just says 'wide panel blood tests' I've had a chest X-ray and X-rays of lumbar spine and pelvis.

So who knows what the next appointment will bring!!!
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Re: I actually don't think I have Fibromyalgia

Postby chookie » Thu May 02, 2013 6:54 pm

Me too... I think I have Chronic Fatigue as I really don't get any pain except for in my feet :-?
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Re: I actually don't think I have Fibromyalgia

Postby jennthefunkyranger » Thu May 02, 2013 10:19 pm

I've wondered this a few times before, as I also work full time, and most of the time I manage to live a normal life. But then after a weekend away with friends, where I still got a good amount of sleep, and didn't push myself particularly (well, apart from climbing a tree which probably was a mistake, and completely not pacing myself...), yet I ended up off work ill on Monday. Punishment for wanting to do what normal people in their 20s want to do?
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Re: I actually don't think I have Fibromyalgia

Postby LouLou » Fri May 03, 2013 10:47 am

Jenn

I know that feeling. I too feel like I can almost carry on as normal though my pace has slowed dramatically and I can't do as much as I used to (though I am guilty of pushing myself) I feel pain all the time but I can carry on as it feels almost bearable, then like you I can over do it just a bit and I'm laid up in bed off work.

I think FM definitely has different variances in regards to how bad each person has it, especially when chatting to those on here who can no longer work because of their FM. I did speak with my GP at my review last week as the last few months have been slightly better for me FM wise. I still have pain and the flares pop up but on the whole I have been better in myself. I asked him if this was FM leaving me alone (wishful thinking) and he said he couldn't predict FM at all.

He said I could have time periods where I feel almost better, then I can have times where it's really bad, it could ease off as I get older or could get worse.

So now I just tend to take things one day at a time and go from there.
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Re: I actually don't think I have Fibromyalgia

Postby Picklepudding » Fri May 03, 2013 12:19 pm

Can I just ask, do most of you just get generalised all over pain or is it in a specific place? My pain seems quite specific...mostly my right hip (I say hip but it's on the bit that, if I was slim, should stick out! I think that the doc called it the right illiac fossa), left inner elbow, left foot and ankle, right index finger and both big toes. I hurt in other places if I've been quite active, especially my left shin and calf. But the pain is always in the same places and is quite a sharp pain.

Does this sound abnormal for fibro?
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Re: I actually don't think I have Fibromyalgia

Postby LouLou » Fri May 03, 2013 1:30 pm

Hi pickle

I have pain all over my body with some areas being worse than others. I really suffer from pain in my legs and feet (both) and my wrists and arms. Some days the pain will be worse say in my right leg than my left, or in my wrists but not my legs. The pain is always there but the severity varies.

Generally speaking the word "widespread" in terms of FM means pain in all 4 quadrants of the body, though as FM affects us all so differently it's hard to say whether what you feel is abnormal or not Pickle, though from what you have said you seem to be getting pain in various places of your body.

Have you looked at the thread that was posted on here called "Previre: Symptoms of Fibro"? It has a diagram on there which goes into better detail of the symptoms and areas of pain and may help to answer some of your questions a bit better.

I hope that helps
xx
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Re: I actually don't think I have Fibromyalgia

Postby painprincess1 » Sat May 04, 2013 7:48 pm

my pain moves.i do have pain in places that seem to stay there most of the time. but i kinda get used to them i guess if u ever can.
whats fibro for one person might not be the same for someone else . and ask away anything after all its how we all learn ,xxxx
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Re: I actually don't think I have Fibromyalgia

Postby cocobella » Mon May 06, 2013 10:30 am

Hi Picklepudding, I was diagnosed back in feb. I am never away from the rheumatologist and am still under investigation for psoriatic arthritis and I'm 26. About a month before I was diagnosed with fibro I had tests for vitamin D and my vit D was extremely low, it was at 30!!!! Which is pretty much close to osteoporosis. I live in Scotland so I know that accounts for some of it, however I am a sun worshipper and I was taking 25ug of vit d a day also! My GP said that 25ug a day would make no difference as my deficiency was pretty bad. I am now on 4 x 25ug of Futilum D3 a day. I must admit my fibro symptoms have not gotten any better since taking the supplements, and am due to get my bloods tested again in 3 months. I think vitamin D does play a big role in pain, aches and depression so it is always best getting it checked out :). x
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