Possible Fibro...not sure myself

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Possible Fibro...not sure myself

Postby thisgoesupto11 » Thu Nov 15, 2012 11:11 am

Hi there folks,

I am currently in the NHS "machine" which means I am at the stage where the Drs are scratching their heads and moving me from place to place. The latest area they are looking at is Fibro. My dad was also diagnosed with this awful condition a decade ago. However I am 38.

I have been suffering with numerous weird symptoms over the last year. The most constant of these are headaches (top right and temple). They can sometimes move into Migraine territory if I am unlucky. I have a dull headache most days, and stronger headaches 2-3 times a week. In addition to the headaches I have constant soreness pain in my shoulders and upper back. This sometimes also radiates into arms and hands. I have done a number of blood tests which came out fine and had an xray of the thoracic, also fine (2 bone spurs). I have been seeing chiropractors and physios and acupuncture with minimal relief. Massage does seem to help calm the muscles down temporarily but it always comes back within an hour.

Not sure if this is related or not but I also have constant stomach bloating and sometimes upper right stomach pain. The bloating is to the point that I look pregnant - despite being male! I am not overweight and try and be as active as possible.

The weirdest symptom seems to be a fatigue brought on by certain medications I might try to alleviate the pain. The fatigue seems to be brought on by both topical treatments as well as oral tablets. Topical treatment example would be: Ibuprofen, magnesium oil . Tablets: antihistamines (certarizine) cocodomal, lyrica, ssris, certain vitamin supplements. This is the most distressing symptom as I cant take anything really for the pain!

The fatigue when it arrives is overwhelming and lasts a few days (providing i discontinue treatment). This combo above has led to a lot of time off work, and with very little answers so far. I am told Fibromyalgia is not hereditary, and my Dad thinks that even his diagnosis was "in the absence of any other possiblity".

Needless to say I am in the middle of anxiety and depression, which i am fighting at the moment as much as possible!

ny insight on this mess is gratefully received. Im not expecting any diagnosis obviously, just possible pointers! :-D
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Re: Possible Fibro...not sure myself

Postby Iceskatemum » Thu Nov 15, 2012 12:02 pm

First of all you have my symapthy, even if you are told it isn't Fibro you are obviously not feeling great at the moment and thats bad in anyones books . Recent research seems to suggested a genetic and hereditary side to FM so the fact that your dad had it should be a clue in the DX.

I'm not medical so can't give DX but you seem to fit the main symptom list , lets hope you get some news one way or the other very soon as waitin gin limbo can be soul destroying.

Good luck
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Re: Possible Fibro...not sure myself

Postby FluppyPuffy » Thu Nov 15, 2012 1:09 pm

:welcome: to the forum :wave: :wave: Sorry to hear how you're feeling :( :(

What you have described may be related to FM, or it could be down to something else as FM symptoms are also shared by a number of other conditions, so getting an answer to the cause of your problems may take a bit of time. I'm not trying to pull you any further down than you are, it's just that these other things tend to be investigated and ruled out first, and then an FM dx may be given. I know you've mentioned already having a blood test, which tends to be one of the first things done to see what the problem may be.

When you were trying the different meds, how long were you taking them?? Just wondering as increased fatigue can be a side effect of some meds. Plus a lot of the ones used to try and manage FM need time to fully get into your system, this can be anything from a couuple weeks to a couple of months, depending on the med, and some of them need to have their dosage gradually increased until you reach the specified or suitable level for you. If you hadn't been on them for very long, it may not have been long enough for side effects to start easing or for them to fully get into your system and take effect. If you'd been on them for a good while tho, then it's possible that they either weren't right for you, or there may be some sort of sensitivity to what you tried as being intolerant to meds isn't unusual for peeps who have or potentially have FM.

The hereditary link is something that, altho it hasn't been definitively/scientifically proved, certainly has quite a lot of anecdotal evidence to help prove it. Just by looking on here, there are numerous members who have someone in their family either dx'd with FM or shows FM~like symptoms.

There are a number of conditions that can be associated with FM, including migraine and IBS which could explain why you feel like you do at times, esp the headaches and the bloating.

As ISM has already said, we can't say whether or not you have FM, for that you need a suitably qualified medically bod. If you feel it may be FM, you'll need to go back and see your GP I'm afraid :facepalm: :facepalm: If you go armed with some info about FM from a reputable source such as this linky http://www.nhs.uk/Conditions/Fibromyalg ... ction.aspx and an explanation of how you feel your symptoms fit its description, hopefully it will get things moving for you and you can a name for what is causing your various problems. :fingerscrossed: :fingerscrossed:
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Re: Possible Fibro...not sure myself

Postby thisgoesupto11 » Thu Nov 15, 2012 4:05 pm

Thank you both for your replies and the nice welcome to the forum! :-D :-D :-D

FLuffyPuppy - In regards to the medication question, here is what I have found so far. When ever I ingest or put on my body, something that it doesn't like the first thing that happens is my stomach swells. In one of many tests (endoscopy this time) it did show that my small intestine was swollen to a small degree. My personal theory is that this swelling is a nervous system or immune reaction or intolerance to whatever it doesn't like. The swelling then causes the fatigue. I could be completely wrong of course! I should point out that it isn't absolutely all medications - it doesn't seem to mind the odd nurofen and paracetamol also valium has been fine.

I will check out the fibro link, but your right, the limbo is mentally wearing, also for my work as they don't know whats going on, and neither do I!

Many thanks again!

James
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Re: Possible Fibro...not sure myself

Postby shazq » Fri Nov 16, 2012 5:57 pm

:welcome: to the forum :wave:

I would keep going back to your gp to get some answers as it might turn out that you will have fibro??, although there is no link that fibro is hereditary we have had this come up on the forum a few times, there have been many families that have fibro run in their families.

My OH and his dad both have fibro.

Have a read around the forum and see if there are any other symptoms you have, write them all down and show them to your gp, if he/she is not going to give you answers ask to be referred to see a rheumy. :goodluck1:
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Re: Possible Fibro...not sure myself

Postby FluppyPuffy » Fri Nov 16, 2012 8:51 pm

thisgoesupto11 wrote:FLuffyPuppy - In regards to the medication question, here is what I have found so far. When ever I ingest or put on my body, something that it doesn't like the first thing that happens is my stomach swells. In one of many tests (endoscopy this time) it did show that my small intestine was swollen to a small degree. My personal theory is that this swelling is a nervous system or immune reaction or intolerance to whatever it doesn't like. The swelling then causes the fatigue. I could be completely wrong of course! I should point out that it isn't absolutely all medications - it doesn't seem to mind the odd nurofen and paracetamol also valium has been fine.

That sounds an awful thing to experience :shock: :shock: It could be one or 2 or all 3 of the things you think may be the cause of the problem, or it could be something completely different, it's never straight forward where something like FM could be the problem.

I asked about how long you'd been on the different meds as, unfortunately, it's not unknown for peeps to not be told all they should really know about meds they have been given :-? :-? And one of the things that they may not be told is how long something needs to take effect :facepalm: :facepalm: Being sensitive to meds is another thing that often comes to light when someone has FM, so that may be another nublet to add to your list of FM~like symptoms/problems. Every little point you can find will all help with hopefully getting you some answers :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Possible Fibro...not sure myself

Postby denys » Sat Nov 17, 2012 12:07 am

:welcome: to the forum :wave: are you any further on with a dx :?: :?:
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Re: Possible Fibro...not sure myself

Postby Fibro Fi » Sat Nov 17, 2012 7:41 pm

Hi there!
I recently got a diagnoss of FMS but I asked my GP if I could be referred to a Rheumatologist. I knew he was a specialist in FMS and CFS/ME as I did some research on Fibro clinics in my area. As I do not live in the UK full time I had to go private otherwise I would not have seen him before having to return to Saudi. My GP did all the blood tests and I took the results to the specialist. It wasn't cheap, but I was so pleased I did it as I was very confident that I had FMS but just wanted it confirming. He was then able to put me on some medication. Incidentally, one blood test came back late, and it confirmed I had Coeliacs disease and it wasn't just IBS as I too suffered from severe and painful bloating but it never entered my head that it could be the gluten.
Good luck with your findings! Let us know what happens. :-D
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Re: Possible Fibro...not sure myself

Postby thisgoesupto11 » Sat Nov 17, 2012 9:59 pm

Thank you all for your replies! It's great to have a community of people offering, not only support, but understanding of what your going through! My OH is really supportive and like me would like some answers!

Fluppypuffy..oh pap probably got your name wrong again haven't I! Sorry! Interestingly some of the medixation sensitivity problem came about after I came off an ssri rather abruptly. I tried to go back on it (anxiety was awful in w/d) but I then got the worst panic attack of my life followed by a bout of akisthesia. This was only remedied by valium. I haven't touched an ssri since! (It was citalopram). I then tried venlafaxine and threw up! Followed by Prozac which also gave me severe panic. I have tried sticking with some meds but the fatigue is just too awful to continue!

Another weird thing is that the same fatigue started way back in my early twenties, after I had got fairly plastered on booze! I thought it was part of the hangover but the datigue would continue for a few days.. I have since given up drinking!

I do manage to work out now ina tailored fashion.. Weights not heavy, focusing on going slow and getting muscles to stretch. I am also working on trigger points that I think are all over my upper back and neck.

My pain clinic bod wants to refer me to neurology but may be rheumatology is the way to go?

I will post back updates! Many thanks again!

James
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Re: Possible Fibro...not sure myself

Postby thisgoesupto11 » Sat Nov 17, 2012 10:02 pm

Oh btw I am gluten sensitive so am on a gluten (read:nice tasting)free diet! I don't have celiacs tho..
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Re: Possible Fibro...not sure myself

Postby jo_jo789uk » Thu Feb 07, 2013 2:35 pm

Hi,

I know how you feel with the frustration of not knowing what is going on.

Unfortunately, I am struggling I think because of my age - I am only 22 years old, female.

I suffer from the following symptoms:
- Pain to neck, back and shoulders
- Stiffness, Tingling, Aching
- Trigger point soreness
- Affecting my daily life - I work full time and also studying to be a solicitor and this is being severely affected, as well as putting a strain on my relationship with my finace on occasion
- Lack of energy - even after a full nights sleep I don't feel rested
- Extreme fatigue - I suddenly get a feeling of extreme tiredness and I physcially can't keep my eyes open. I will sleep for roughly an hour, and then wake up feeling dazed and confused for the next half hour
- Feeling down
- Trouble focussing on tasks
- Headaches - they get quite severe - sensitivity to light etc. If I lie still it eventually plateu's but the minute I move it comes back with avengence
- Sensitivity to cold - if cold water touches my hands, I get shooting pains up my arms

I have been on lots of painkillers but am currently taking Tramadol.

I am gettig frustrated that GP's won't do anything to help - I haven't been able to convince them to send me to a Rheumatologist or anything which ideally would be helpful.

I hope you get a diagnosis soon so you can start getting help with whatever it is!
“Perhaps it is our imperfections that make us so perfect for one another!”
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Re: Possible Fibro...not sure myself

Postby E-Bunny » Mon Feb 11, 2013 4:11 pm

Hi,

Im also having similar issues, and my symptoms are very similar to jo_jo789uk..

Because i have E, my GP blames everything and anything on that, so getting no where fast.. Hoping my E neuro can shed some light and maybe pass on my details who has more sense than my :crazy: GP..

Hope all goes well for you !

A very, very tired Tina :(
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Re: Possible Fibro...not sure myself

Postby shazq » Mon Feb 11, 2013 6:03 pm

Hi Jo-jo & E bunny

Not sure what type of relationship you have with your gp but here is a NHS link on fibro, you could print it off and say one member of your family came across it? and it ticks all the boxes? Then ask again if you could be seen by a Rheumy? :goodluck1:

http://www.nhs.uk/conditions/Fibromyalg ... ction.aspx
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Re: Possible Fibro...not sure myself

Postby jo_jo789uk » Tue Feb 12, 2013 3:07 pm

Hi shazq,

I like your sneakiness!

I will give this a go, thanks :)

I am currently in discussions with work too. I work as a paralegal in a solicitors firm who have dealt with Fibro claims before, so they recognise the symptoms too. I am working with them to see if I can work from home one or two days a week, so I have less pressure than I would coming into the office for full days. That way I don't lose any money (which I cannot afford to do), but I get to have less stress and be a bit more comfortable which will hopefully help massively.

E-bunny - I hope you have some luck getting a prognosis. I'm fighting to get mine sorted so if we keep working through it I'm sure we'll get there eventually! I keep getting told I am suffering from basic muscular pain......!

Jo.
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