Could I have fibro?

All your fibromyalgia experiences, questions and answers.

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Could I have fibro?

Postby MOOGLE » Sun Feb 12, 2017 4:40 pm

Hi all,

I'm sorry if this has been covered 1000's of times before, but I could spend hours reading threads to get answers & everybody has their own symptoms.

I've been in pain with my lower back since Dec 2015. It came on all of a sudden & was intense pain. I would literally take very strong painkillers & be on the sofa asleep for most of the day. Although I have always had to be careful with my back because doing things like lifting have always irritated it, it has never been like this before.
I had to take 4 & 1/2 months of work whilst I worked on trying to get to a point where I could manage the pain.
In this time I was diagnosed with diverticulosis. I was also diagnosed as having quite bad lordosis & hypermobility. I also have IBS & an over active bladder.

I also had the test to see if I had endometriosis because I've also got symptoms which suggested that could have been an issue & there is a big family history with women's problems with my Mum. I don't.
My Mum has slipped discs & ostio-arthritis.

I saw NHS physio's, private physio's, I had acupuncture.
The physio's just gave me exercises to do. The NHS physio basically said that if I reduce my stress (I'm a secondary school teacher - very stressful job) eat better & exercise more, everything will be fine.

Well, in the time I was off, I was doing yoga/stretches for around an hour a day as well as taking pain relief (co-codomol) & although it helped the pain, I was still in pain every day. I wasn't anywhere near as stressed as I wasn't at work & I was eating better because I had the time to eat better (cook from scratch etc.)

So, where I am now....
I was at a steady point with the pain, still in pain every day, still taking co-codomol every day, but managing it. I have to take the stuff with caffeine or I am so tired. I find it very hard to concentrate. Bear in mind this is after taking it roughly 3-4 times a day for the past 14 months. The pain has also moved to my mid back (where the shoulder blades are).
A few weeks ago we had Ofsted in. Doing 2 * 15 hour days on 4 hours sleep (& working the rest of the week), plus the increased stress has now meant that I've got terrible pain in my neck. When I say neck it is actually the bone where the neck/spine meet.

I had to have 2 weeks off.

I've had an MRI & it all came back clear except for a few minor things.

I was referred to pain management & I've had an injection in my back (I could only have anesthetic because I had a chest infection at the time & he wouldn't inject the steroids) which made it worse.

I've also been paying to have weekly alternative therapy since Oct ish. He's done electro-acupuncture, a technique similar to cupping & manipulative massage therapy. It gives short term relief, but hasn't really made much difference.

He thinks that there is inflammation on my actual spine. My spine is also incredibly painful to touch with very little pressure in certain places.
I am knackered all the time, given the chance I'll sleep for 10+ hours, I think that I might also get brain fog. I'm not sure though. Sometimes I just feel knackered & although I can tick along, if I'm asked to think about something new it takes a fair bit of effort.

I have issues with anxiety, mostly around work. In particular, I'm now stressing big time that they'll try & get rid of me because of my attendance. I'm now getting a 1st warning because of my absence. They aren't happy to say the least. Even though they know that I'm still having tests & being very pro-active in trying to manage it.

The alternative therapist that I see thinks that I have fibromyalgia, but in the words of the first Doctors at the practice "I'm not interested in what he thinks, he isn't a Doctor."
Very helpful!

However, I saw somebody else last week (after my MRI results) who was actually sympathetic & helpful & she agreed that I might have fibro & has referred me to a rheumatologist.

Things that help are the painkillers, heat & doing my exercises/stretches & I use an actipatch at work (similar to a TENS machine.) This is just for my back. For my neck I'm using heat patches & was taking naproxen (I've stopped taking that though because I don't think it was actually helping) & I was given diazapam for a short time, but I've come off that now.

I was just wondering if anybody else has had a similar experience to me & if you have any advice of where to go now?
Thanks for taking the time to read.

Btw I'm 30 (just turned) & I am overweight, but actually my mobility is good. People seem to think that I'm fine because they see they moving & I look fine to them. However, what they don't see is the pain killers, actipatch & stretches needed to just get to work. They also rarely see me when I'm in pain & struggling at work.
I find it really frustrating to be honest.
MOOGLE
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Re: Could I have fibro?

Postby *Lisa* » Sun Feb 12, 2017 6:18 pm

:welcome:

There does sound like some classic FM symptoms there. I have regular physio the trigger point therapy and it is only short term. Everything is short term. You have to keep on with it although nothing seems to fully help.

Have you had your bloods done? This can detect any inflammation. Also they can x/ray your back as well for inflammation.

WIth Fibro you are tender in alot of areas especially the back and spine.

I have loss of lubar lordosis and this put alot of pressure on my muscles adding to the back pain and many strains and spasms.

FM is worse with stress and tension.

You seem to be doing everything you can. Have you tried Hydrotherapy, this has good results along side what your are currently doing but again you will have to maintain this.

With the stretches you have to be very carefull as I have found that if you do too many/over do the stretch it can actualy cause more harm then good.

Seeing the Rheumi is the best way forward which you are waiting on.

BTW... The doctor that wasnt interested in your therapists ideas, thats not good! My physio thought I had fibro, she conatct my GP and he then sent me onto a Rheumi but the good thing is you saw someone else who took things seriously.

Your doing all the right things.

Good luck for your appointment.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Could I have fibro?

Postby MOOGLE » Sun Feb 12, 2017 9:21 pm

Thank you for the reply :)

I've had my bloods done & they all came back as clear. Although I'm not sure what they tested for, I know it was quite a few things though. The GP (helpful one) did say that it doesn't mean that there is localised inflammation on my spine.
The MRI didn't show any signs of inflammation (if you can see on there?)
The physio said that it feels like there is though. He said the skin has a different texture & that it feels puffy.

The stretches do seem to really help. But I am a lot worse when I don't do them for a few days.
As I'm hyper mobile my range of movement is more than "normal" so I might be over doing it without even realising.

The only thing that makes me think that it might not be fibro is that I don't know if I have pain in 11 points.
I certainly have pain in a lot though & in just over year I've gone from having pain to one area to 3.

I'll have a look into hydrotherapy. I've just bought some Epsom bath salts. Are they are good?
MOOGLE
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Re: Could I have fibro?

Postby MOOGLE » Sun Feb 12, 2017 9:28 pm

Oh & the Doctor who wasn't bothered in what the physio has said infuriated me.

I wouldn't mind, but I was told by the pain management consultant that I needed electro-acupuncture, but that the NHS didn't do it. So I found somebody to do it, told them what his findings were & that was the response.

All that particular Doctor keeps telling me is that I have anxiety problems, but hasn't actually offered me a single thing to try & alleviate it.

At least I've found a more helpful Doctor now. The problem is trying to get an appointment with her as she works part time (plus she's actually helpful, which is also probably why it is so difficult to get an appointment with her!)
MOOGLE
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Posts: 10
Joined: Sat Feb 11, 2017 11:52 pm

Re: Could I have fibro?

Postby *Lisa* » Mon Feb 13, 2017 1:30 pm

Its good that you managed to find some one who listened. I myself have had a probem just today with the same thing!. My GP is normaly very good but seemed to have over looked my recent changes in my back as just me!! this tends to happen often. I saw another one today and in fact I was right (you know your own body) and now need MRI.

Fibro is not detected in any bloods or x/rays / MRI but by examinations and symptoms. Inflammation is not a part of fibro although some may disagree.

I at first never had all the tender points, I had severe stiffness and ticked the boxes for trigger points.

I do know that Hypermobility is very commen alongside Fibro.

I find epsom salts good for helping the muscles relax.

I have anxiety, I was told many times it was that and the tension from it until the physio spoke to my GP. I was not diagnosed for many years from onset of symptoms because of it being down as anxiety. I know any people also have this problem with being diagnosed with depression before an FM diagnoses.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
*Lisa*
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Joined: Sun Sep 07, 2008 2:01 pm

Re: Could I have fibro?

Postby Dubstop » Tue Feb 14, 2017 4:13 pm

MOOGLE wrote:Hi all,

I'm sorry if this has been covered 1000's of times before, but I could spend hours reading threads to get answers & everybody has their own symptoms.

I've been in pain with my lower back since Dec 2015. It came on all of a sudden & was intense pain. I would literally take very strong painkillers & be on the sofa asleep for most of the day. Although I have always had to be careful with my back because doing things like lifting have always irritated it, it has never been like this before.
I had to take 4 & 1/2 months of work whilst I worked on trying to get to a point where I could manage the pain.
In this time I was diagnosed with diverticulosis. I was also diagnosed as having quite bad lordosis & hypermobility. I also have IBS & an over active bladder.

I also had the test to see if I had endometriosis because I've also got symptoms which suggested that could have been an issue & there is a big family history with women's problems with my Mum. I don't.
My Mum has slipped discs & ostio-arthritis.

I saw NHS physio's, private physio's, I had acupuncture.
The physio's just gave me exercises to do. The NHS physio basically said that if I reduce my stress (I'm a secondary school teacher - very stressful job) eat better & exercise more, everything will be fine.

Well, in the time I was off, I was doing yoga/stretches for around an hour a day as well as taking pain relief (co-codomol) & although it helped the pain, I was still in pain every day. I wasn't anywhere near as stressed as I wasn't at work & I was eating better because I had the time to eat better (cook from scratch etc.)

So, where I am now....
I was at a steady point with the pain, still in pain every day, still taking co-codomol every day, but managing it. I have to take the stuff with caffeine or I am so tired. I find it very hard to concentrate. Bear in mind this is after taking it roughly 3-4 times a day for the past 14 months. The pain has also moved to my mid back (where the shoulder blades are).
A few weeks ago we had Ofsted in. Doing 2 * 15 hour days on 4 hours sleep (& working the rest of the week), plus the increased stress has now meant that I've got terrible pain in my neck. When I say neck it is actually the bone where the neck/spine meet.

I had to have 2 weeks off.

I've had an MRI & it all came back clear except for a few minor things.

I was referred to pain management & I've had an injection in my back (I could only have anesthetic because I had a chest infection at the time & he wouldn't inject the steroids) which made it worse.

I've also been paying to have weekly alternative therapy since Oct ish. He's done electro-acupuncture, a technique similar to cupping & manipulative massage therapy. It gives short term relief, but hasn't really made much difference.

He thinks that there is inflammation on my actual spine. My spine is also incredibly painful to touch with very little pressure in certain places.
I am knackered all the time, given the chance I'll sleep for 10+ hours, I think that I might also get brain fog. I'm not sure though. Sometimes I just feel knackered & although I can tick along, if I'm asked to think about something new it takes a fair bit of effort.

I have issues with anxiety, mostly around work. In particular, I'm now stressing big time that they'll try & get rid of me because of my attendance. I'm now getting a 1st warning because of my absence. They aren't happy to say the least. Even though they know that I'm still having tests & being very pro-active in trying to manage it.

The alternative therapist that I see thinks that I have fibromyalgia, but in the words of the first Doctors at the practice "I'm not interested in what he thinks, he isn't a Doctor."
Very helpful!

However, I saw somebody else last week (after my MRI results) who was actually sympathetic & helpful & she agreed that I might have fibro & has referred me to a rheumatologist.

Things that help are the painkillers, heat & doing my exercises/stretches & I use an actipatch at work (similar to a TENS machine.) This is just for my back. For my neck I'm using heat patches & was taking naproxen (I've stopped taking that though because I don't think it was actually helping) & I was given diazapam for a short time, but I've come off that now.

I was just wondering if anybody else has had a similar experience to me & if you have any advice of where to go now?
Thanks for taking the time to read.

Btw I'm 30 (just turned) & I am overweight, but actually my mobility is good. People seem to think that I'm fine because they see they moving & I look fine to them. However, what they don't see is the pain killers, actipatch & stretches needed to just get to work. They also rarely see me when I'm in pain & struggling at work.
I find it really frustrating to be honest.

It certainly sounds possible that you have Fibro, mine was also diagnosed after a long time back and fore with back pain, lots of pain killers that only helped a little bit.
Once you see the rheumatologist and they have done more poking and prodding and scans, I was injected with a radioactive isotope and given a full body CT scan; no super powers though
:(
They will rule anything else they can think of out and then will probably say Fibro, I hope for your sake it's something else that they can actually treat but if not, welcome to the club....

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Dubstop
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