Not sure if fibromyalgia or not?

All your fibromyalgia experiences, questions and answers.

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Re: Not sure if fibromyalgia or not?

Postby Fibroised » Mon Jun 30, 2014 8:21 pm

Oh Gem, know exactly how you are feeling! And the frustration of not knowing what is wrong on top of everything else!!! But hey, you are being thoroughly checked, and that is no bad thing.

In the past 3 years I have had every organ checked, either Xrayed, scanned or both. Have had an ECG, a scan of my veins, an MRI of my head as well as a scan. Was told I had possible sleep apnea and had to have the machine. Pain in the you know where to use and I was allergic to it! Never had an allergy to anything before that! Didn't have apnea at all! Had Lumbar Puncture, pints of blood and urine taken, and have been tested for so many illnesses.

Fibro was diagnosed by proccess of elimination so I feel it is always good to know that your organs/blood/wee etc are in good working order, and us Fibro sufferers have the advantage, if you can call it that, that everything, and I mean EVERYTHING has to be checked. And I'm still being checked. A new symptom, no matter how minor is checked by my Rheumo.

I did a lot of googling too and drove myself mad! I had every illness under the sun by the time I had finished!!! It was my partner in fact who first suggested Fibro as he also googled, in a much calmer manner than me, and kept coming across it. By then I had the painful points and my GP said it sounded like it, but in fact he had never had a patient with it before, and actually apologised for not guessing it sooner!!! He has since diagnosed someone else with it, thanks to all my symptoms!!! And he is constantly keeping himself updated.

It isn't the nicest of illnesses, and I can never relax because I don't know what the next day will bring. Just one example - I can have total sleeplessness one week, then sleeping all the time the next!!! I can't make plans too far ahead, and I'm terrified to plan a very badly needed holiday!

But, as I said, there is an advantage – I get some comfort in knowing that I don't have any serious or fatal illness, which would be quickly detected due to being constantly tested.
It took a lot if different medication over the past 3 years to get the right combination for me, and I suffered lots of ugly side effects, but the cocktail I take is good. Could be stronger, in my opinion at times, but all agree with me and I have no side effects.

It sounds like you are being well looked after, whatever the outcome will be, so the very best of luck in your continuation. Hopefully you will get a proper diagnosis soon. This forum is brilliant and like you, I found it by accident. There is so much info to be learned from members, and not just about Fibro. And everyone knows how you feel.
Mind yourself xxxxxxxxxxxxx
Last edited by denys on Mon Jun 30, 2014 9:50 pm, edited 1 time in total.
Reason: to make paragraphs smaller for easier reading
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Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Tue Jul 01, 2014 3:57 pm

Hi, thanks for your replies :)

Tally1068 - I can so identify, I keep thinking I must seem a right hyponchondriac and I keep feeling like one! In fact when I have better days with less pain and less fatigue, I do wonder why I'm off work. And then I walk to the local shop today which is 10 minutes max and it has taken me over an hour to stop feeling ill! The Amitripyline seems to finally be helping with sleeping but does leave me unable to do much until lunchtime.

Fibroised - Thanks. I had read a little about that machine for sleep apnea, but think I would struggle with it as I breathe through my mouth (nose blocked by bone). Ouch, a lumbar puncture must have hurt?!

At first my partner thought I had scarlet fever!! Well at least he makes me laugh... :mrgreen: :roll:

Funny you should mention the holiday thing, I was wondering how you do manage those if you never know how you'll feel. We were meant to be going somewhere this summer but I feel completely in the air at the moment. I'm desperate to go away regardless but partner doesn't think it's a good idea. I did go abroad for my 30th with a terrible virus and was in bed most of the week! But hey, it was a hotel bed so at least a change of scenery...

Thanks again to everyone, it is so nice to talk to people who understand how I'm feeling, even if it turns out not to be fibro I really appreciate every word. :flowers:
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Re: Not sure if fibromyalgia or not?

Postby FluppyPuffy » Tue Jul 01, 2014 5:06 pm

Zia2014 wrote: The Amitripyline seems to finally be helping with sleeping but does leave me unable to do much until lunchtime.

This is a known problem/side effect with Amitriptyline, but can be managed and reduced with a bit of jiggling around with the time you take your Amis. For some, taking them a couple of hours or so before going to bed helps, for others taking them around 12 hours before they will be getting up helps, and some find taking them early evening/with their evening meal is what makes the difference to the morning~after zombification.

Hollibobsying with FM is possible, will try and come back later with some thoughts on that one 8-) 8-) 8-) 8-)
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Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Tue Jul 01, 2014 5:35 pm

Thanks FluppyPuffy, would appreciate any thoughts on how to do holidays!

I've so far taken the Amit at 5pm, at 7pm, and between 8-9pm. It doesn't seem to make too much difference in the morning, but taking it too early means I can't get off to sleep as the effects seem to pass. So I have to take it 2 hours max before bedtime. I think I need to see how I go with getting up early again as I've been sleeping in later this week, because I'm so tired :roll:
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Re: Not sure if fibromyalgia or not?

Postby MichelleJ » Wed Jul 02, 2014 10:26 pm

Hi gem and welcome. I've scanned thru most of the other comments so will try not to repeat what they said already. I wanted to pick up on the heat thing though as I noticed it was a particular concern for you. This is a symptom I get. I can go both ways but more often than not its hot and even in freezing temperatures. I feel like I'm on fire but then touch my skin and its cold. I do get sweating with mine too but sometimes it is just feeling hot without the sweating, this is since starting with fibro and I am not at the menopause. It has been put down to fibromyalgia or m.e/Cfs (I have both). Poor temperature regulation is a symptom of both conditions although not everyone gets it. So yes, if it does turn out to be either fibro or Cfs then it could be down to that.

The other thing, I know you put your dr has said the blurred vision is unrelated to the rest of your issues but this may not be the case. If you do have fibro then blurred vision can be a symptom, I know I have it! This symptom was diagnosed as being part of my fibro by an optician who knew about it and then a different optician recently agreed that yes this can happen as the eye muscles can be effected the same as any other muscles. They have helped me with this by giving me a second pair of glasses for reading with a different lense in to my every day glasses so as if my eyes blur when trying to read or use computer etc I can just swap to my other pair. So what I'd say is if or when you get a fibro diagnosis it would be worth making a trip back to the opticians to tell them and see if they can help you. Oh, and mine comes and goes too, just as you describe.

Finally, I would back up what the others have said re exercise but take it steady. If you do have either Cfs or fibro you can do more damage than good if you over do it. I have never done Pilates so can't say on that but I find an exercise bike very good as its non weight bearing. I currently do 5 mins a day on mine. Gentle walking of you can manage it but if the pain increases and doesn't settle quickly then it could be too much. Swimming can be good too and this is something I. Tolerate well. But find something that you can do that doesn't make you feel worse and it can really help you. Sure this will be the case whatever you have if you don't go mad with it as it will prevent u stiffening up.

Another finally, listen to your body. If it's saying its too much then stop, whatever it may be. Like the half hr drive to work if you can't do it without becoming worse then don't. If you can't stay in work without becoming worse then don't. When I first started with this 4 years ago I listened to everyone around me telling me to keep going, stay in work, don't go on the sick cos your better to do that whatever it is. Well how wrong they were and was I to listen. I made myself 100 times worse and now can't work at all and have a full time carer. I knew I wasn't well enough to be in work but everyone else including my then husband put on so much pressure that I kept going instead of resting and pacing when I could maybe of got a grip on it much earlier. Who knows, but certainly with m.e rest in the acute phase is vital to getting into recovery and I missed that chance. I know I'm talking about these conditions but at the min, like me at that point, you don't know if its that so if I were you I'd air on the side of caution and treat as if you do. Just my opinion, others may disagree but my friend took that advice when she showed signs of it before diagnosis and has since been diagnosed. She has now been able to return to work and she thinks its thanks to taking that advice early on. Hope this is of some use to you Hun x
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Re: Not sure if fibromyalgia or not?

Postby denys » Thu Jul 03, 2014 11:03 am

Michelle this is going to sound really horrible and I dont want it too, we arent allowed to advertise goods on here unless its fibro related and so I'm going to have to ask you to take down your link to your cards out of your signature box, you can post cards on here in craft for people to look at but if you are selling them then its breaking the rules. So sorry to have to bring it up

As you hadnt been on I have removed it for you
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Re: Not sure if fibromyalgia or not?

Postby iblinkin » Thu Jul 03, 2014 6:48 pm

Hi Zia, just wanted to let you know that vitamin D and hormone levels are always affected by FMS is as vitamin D is actually a hormone and what one needs to do is get them both checked and do replacement therapy. When you take the vit. D use only D drops and can be taken in water and don't be surprised that your hormone level come up very low in the tests as it's to be expected. This is extremely important to do and you should see some improvements in how you feel but it won't happen overnight! Good luck and i hope this helps. :-) Gentle hugs and kind thoughts going your way.
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Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Fri Jul 04, 2014 2:08 pm

Hi,

More replies! Thank you so much :-D

Michelle - you have no idea how much your post has helped me! To hear someone identify with me regarding the heat is so nice, as it doesn't seem to be mentioned much in relation to fibro. Although I'm sorry you have the same problem obviously! My partner often feels my forehead and comments that I'm not hot (I can't tell, my hands have little circulation and are freezing). I think my colleague thought I'd lost the plot when I repeatedly turned the radiator down in February - and I can see know why she was so annoyed with me!! :oops:

That's so interesting about your optician. My GP told me to go and see one so I did, and apart from ongoing issues (one short and one long sighted eye) I have no problems. I did say I'd have blurriness and more floaters but he said it wasn't anything he could find :?: It does seem to get worse when I use the computer for ages or try and read, so I don't do much of that each day. Although that may prove a real problem when I go back to work...

Swimming hasn't been going terribly well, I can't manage more than about 15 minutes and walking is slooooooow :roll: I do have an exercise bike though so will give that a try. Although 10 minutes was my maximum before all this!! :oops:

Thank you for the advice re. work. If my GP agrees I can (she wouldn't let me return last time) then I only have one week of term left, and I was thinking about doing afternoons and see how I go. I can't move in the mornings - I missed a dvd delivery this morning and was most gutted!!!!

iblinkin - Sorry if I wasn't clear in my post, but my Vit D levels are fine now, I was on the high dose for a month and then pushed them to re-test me. So my levels were normal when I started getting worse.
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Re: Not sure if fibromyalgia or not?

Postby MichelleJ » Sat Jul 12, 2014 9:42 pm

Sorry Denise, I hadn't realised it was against the rules. I knew I couldn't sell on here but hadn't realised I couldn't link to my Facebook page. Thank you for sorting it. I noticed though it had come up on another post I made last night in a topic I put in the private section. Didn't realise till someone commented saying they were nice. So have gone into my settings myself and think its off now.

Zia, glad I was able to help. With my bike I literally started with 20 seconds and built it up from there. 5 mins is my maximum now, anymore than that I tend to be in more pain for a few days following. Same with my swimming, to start with I couldn't even swim, I just walked in the water and did stretches for a few mins and have gradually built it up to my 10 lengths. I have to stop and rest between each length and sometimes even in the middle of a length too. So don't worry how much or little u can manage cos even the tiniest amount of movement is worth doing.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Not sure if fibromyalgia or not?

Postby FluppyPuffy » Sat Jul 12, 2014 11:03 pm

FluppyPuffy wrote:Hollibobsying with FM is possible, will try and come back later with some thoughts on that one 8-) 8-) 8-) 8-)

Been looking for this, I knew I'd said somewhere that I would try and come back to add something, but for the life of me, I couldn't remember what or where it was :oops: :oops: :oops: :oops: :oops: :oops:

Basically is comes down to planning things well. For packing, we get the bags out a week or 2 before we go and start putting things in gradually. I have my trusty lists app that I can cross things off as I go along. Anything that I find will need to go in later gets transferred to the relevant list as I go along until I'm down to the last minute stuff that will go in a bag in the car when we get in to set off.

I list every single possible item that comes to mind rather than just making a generalised point like I did preFM. And as well as a list for me, I have one for OH, and one for the doglet. Altho offspring hasn't been with us for the past couple of trips {prefers to go to grandparents and abuse Grandad's t'interweb connection} as he goes to my folks, I have a list for his stuff too, incl all his pooting paraphernalia :pcsmash: :pcsmash: :pcsmash: :pcsmash:

For destinations, we have a good look into what is in the surrounding area, how far things are, what the terrain may be like, accessibility to places etc. We also do the same for accommodation. As doglet comes with us, her needs are also part of the the list of requirements. Same with the route we go. For both me and doglet, several stops are necessary, so we use various sites to find where will be suitable along the way.

Doing this kind of stuff in the couple of weeks before we go makes things a lot less stressful for all of us. The app I use is also installed on OH's phone and as it syncs on a regular basis, we can both see what the other has put in at any time.

Even a surprise trip can be arranged using a similar plan. OH did this a few years ago when I had one of those birthdays with an 0 at the end. My biggest wish was to go to Silverstone to watch the British GP :f1-car: :f1-car: :f1-car: Knowing how I was at the time, and how quickly things can change, he took every possible scenario into consideration, and worked with me being at my absolute worst, and with a couple of minor compromises needing to be made, gave me the best weekend possible :f1-car: :f1-car: :f1-car:
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Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Sun Jul 13, 2014 4:21 pm

Thanks Michelle :) As work is tiring I am going to wait til I break up, and then try some cycling/swimming again and see how I go.

Ah Fluppy thanks for coming back to this and all your tips! Silverstone sounds amazing, what did you get to do? :mrgreen:
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Re: Not sure if fibromyalgia or not?

Postby FluppyPuffy » Sun Jul 13, 2014 7:59 pm

He took me to watch F1 :f1-car: :f1-car: :f1-car: We saw all practices, quali and the race, along with the support races and the other stuff going off, incl parachute display, Red Arrows and a whole host of other exciting stuff :bear-dancing: :bear-dancing: :bear-dancing: I would have liked a track day sort of thing, but not being allowed to drive is a bit of a hindrance for such things :-D :-D :-D
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Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Thu Jul 17, 2014 1:28 pm

Wow that sounds amazing! I've always wanted to drive round that track, and ironically I used to live not that far away :roll:

Is it the fibro stopping you from driving? I still do but it makes me nervous, my concentration varies and I'm convinced I'll hit something :(
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Re: Not sure if fibromyalgia or not?

Postby FluppyPuffy » Thu Jul 17, 2014 2:28 pm

My licence was revoked in 2000 because I had problems with judging speeds, distances, and general spatial awareness. I also had, and still do have, really bad bouts of dizziness/vertigo which come on without any real warning, usually leaving on the floor in a heap, which isn't ideal. This was in the days before FM had shown its true and full uglyness, which led to me being treated for something completely different due to how symptoms were presenting themselves, an inner ear problem, Menieres Disease. Because I didn't respond to the meds used for for Menieres, I had GPs and ENT specialists scratching their heads as to why. It was only when other things started appearing that it became apparent there was something else at work, which led to the FM dx.
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Re: Not sure if fibromyalgia or not?

Postby Zia2014 » Thu Jul 17, 2014 2:55 pm

Oh no what a nightmare :( It's really hard when so many things have overlapping symptoms. I get bad dizziness but not usually when I'm driving, so for now I'm going to carry on.
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