Hi :)

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Hi :)

Postby BeeB » Fri Jul 06, 2012 4:46 pm

I don’t know if it’s right of me to write on here, and I’m not really asking for a diagnosis (because obviously I know you can’t) but I’m reaching the end of my tether really.

I have been having widespread pain for over three years now, have had test after test run at the Dr’s and Hospital, and nothing is wrong. But it is not normal for me to feel like that, to be constantly exhausted and in pain.

My hands, shoulders, hips, feet are usually worst. Though my knees are also really bad, but I have a misaligned knee cap, so I tend to count that separately.

I get chest pains as well, for example just this morning, I stood up and got a shooting pain from my left shoulder down into my chest. Which left me sore for a couple of hours. I very often get pain behind my left breast, I can’t really explain it any better than that. I also occasionally get what feels like a missed beat in my heart, but I have had ECG’s and nothing showed.
I also click sometimes, I make this very strange ticking noise. I thought that was in my head, but my OH has heard it to. My joints are all very stiff and crack too.

I also have IBS, which I have read can also be linked to the condition? I don’t know if that is true or not. But I get bloating and abdominal pain from that, as well as obviously the other difficulties (sorry for tmi!).

I have problems with my balance/standing up after sitting or lying down. I get what I can only assume is postural hypertension (I think it’s called?). Everything goes white and I wobble for a bit. I also take tablets at the moment for dizziness, which I apparently developed after a bad bout of laryngitis, but that was last October, and we’re now in July and it’s still happening. So I don’t know!
I permanently have a lot of catarrh, which means I have a very sore throat a lot of time, especially when waking.
Also when people poke me, or I catch myself, or the kittens climb on me (which they do a lot) it’s very painful. I think that’s because there’s a lot of pressure on a small space. It makes it worse doesn’t it. But my OH doesn’t think that should be happening, because they are only little.

I always feel cold as well, like having a duvet downstairs in the summer. We keep one behind the couch just for that purpose.

I also, and this scares me most I think, really struggle to concentrate. I mix up words and letters. I have also developed a stammer. I constantly forget words, and it’s now a bit of a running joke with my family (not the OH because he knows I’m worried, but the ones who don’t know) that I stop midway through speaking because I just can’t get a word.

I came across Fibromyalgia a couple of weeks ago, because myself and the OH were visiting family, and staying in a Hotel. I woke up with pain, which is fairly standard. I invariably wake up with pain in my feet (so I can’t put them on the floor), in my hips, shoulders and hands. I keep putting it down to having crap mattresses at home (in all three of them we have had since this has started), I think I know it’s not that really. Anyway, the frustration at it happening again, I checked the internet, a google search for “pain when waking” or something, and this came up.

So I have read a little, and I am wondering now if this is it. The reason for everything? But how do you even begin to suggest something to a GP? I’m sorry if I shouldn’t be asking, I know you can give me know answers and I might be well off. But it’s just so hard, I end up crying in my Dr’s and he asks what’s up and I just say I’m tired, and I am, mentally and physically. Anyway. I’m sorry. I’m just scared and worried. I’m 21 and I just can’t deal with any of this.
"Mostly harmless," admitted Ford with a slightly embarrassed cough.
User avatar
BeeB
UKFM Newbie
 
Posts: 4
Joined: Fri Jul 06, 2012 4:19 pm
Location: North West

Re: Hi :)

Postby e777 » Fri Jul 06, 2012 6:48 pm

Hi there,

Sorry to hear that you have been feeling so unwell. What you have described does sound a lot like fibromyalgia, but there are a lot of illnesses that can have similar symptoms so you really need your diagnosis to come from your doctor.

If you do not think that your doctor takes you seriously, or is doing enough to diagnose what is wrong with you, then it is probably time to find a new doctor who might look at this with fresh eyes and be open to treating this properly.

If it is fibro, usually people have to be referred to a rheumatologist for a definitive diagnosis as they specialise in illnesses like fibro.

If you do not have the option of switching doctors, could you take your husband with you to an appointment with your current doctor? Sometimes doctors take things more seriously when there is another person saying the same thing.

Good luck with getting a diagnosis
e777
UKFM Member
 
Posts: 22
Joined: Fri Mar 02, 2012 9:29 pm

Re: Hi :)

Postby FluppyPuffy » Fri Jul 06, 2012 9:25 pm

:welcome: to the forum Beeb :bear-dancing: :bear-dancing: :bear-dancing:

First of all, there's no need to wonder or worry about posting on here, or apologise for doing so. You have a health problem that you're trying to get identified and treatment for, and you're wanting advice about how to get your questions answered.

There is a lot of info and advice and suggestions on here, so hopefully we can at least help you set off on the right path to getting things sorted :fingerscrossed: :fingerscrossed: Sadly, what you've experienced so far is typical of what a lot of people have gone thru, being tested and tested and tested again, but still not finding out the reason for your problems :facepalm: :facepalm: :facepalm:

e777 has already given you some good advice, so I'll try not to repeat too much of what has already been mentioned.

To raise the possibility of FM with your GP, you could talk some info with you from credible sources such as this linky http://www.nhs.uk/conditions/fibromyalg ... ction.aspx and explain you have been looking into your various symptoms and FM has come up as a possibility, and you were wondering if it could be a reason for your problems. Maybe keep a diary of your symptoms, pain levels etc for a while as well, to help illustrate things as well. Take all this with you to see your GP and see what their reaction is to the possibility.

If they are open to the possibility of FM being the problem, then ask what needs to be done next. If they're not keen, then as e777 as said, make an appt with a different GP and keep going until you get someone to listen properly, even if it means you need to swap to a different surgery.

When you do find some understanding and help from a GP, ask them what needs to be done next. Your GP may feel able to make the dx themselves and start treating you for it, or they may feel the need to send you for other tests they feel necessary and/or refer you to an appropriate specialist for dxing.

While you're deciding on your next plan of attack, have a look around the forum as you may find some helpful suggestions with managing your symptoms. And if there is anything you want to know, just ask and we'll try to help you with it :bear-dancing: :bear-dancing: :bear-dancing:
As a Public Moderator 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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Hi :)

Postby BeeB » Fri Jul 06, 2012 9:29 pm

Hi, thanks for replying. Think my heads all over the place, as you have said I am not feeling well physically, and there's a lot going on at home atm. I could do with being well to be able to deal with it! But so is life!

I'm still going through things with the Dr., he wants to do a full background check with me next time I'm in, to see if he can run up anything from my History. If I'm honest he's the first Dr I have seen that I feel does take me seriously, though he's insisting on running tested I have had before. Though he hasn't gone "there's nothing wrong" at the end of them which is an improvement.

It's hard at my surgery, its a training practice. So you have the three main Dr's (including my actual GP) and then a lot of trainees/newly qualified Dr's, like the one I am seeing at the moment. I have seen about six or seven Dr's since this started, and been sent for the same tests three or four times. But this Dr is nice, I'm just hoping he doesn't leave before we get somewhere - if there's anywhere to get! Because then the whole process starts again. My fiance thinks I should change practices, but that's a whole lot of hassle and I would have to start from the beginning again anyway.

I have just had a huge series of bloods, including liver function, one for inflammation, full blood count, kidney function, various vitamin deficiencies, and something to do with bone density? All of which came back negative. This week I am having Thyroid Function and Fasting Glucose, which I fully expect to be negative too. I last had all these tests 12 months ago, and they were negative then. All the symptoms have been around for 3+ years so logic says it's not any of the above!

After that I have to see the Dr again, and he wants to do a full history, like I said, then ask for a referral to a pain clinic. He said there's nothing more he can do really. Which I forgot to mention in my opening post.

What does a Pain Clinic do?

I think I will take him with me next time, partially for the back up, which sounds like a good idea. And also because I think it would help him. He's worried, though I try not to tell him or worry him. He knows that something is not right.

Thank you.
"Mostly harmless," admitted Ford with a slightly embarrassed cough.
User avatar
BeeB
UKFM Newbie
 
Posts: 4
Joined: Fri Jul 06, 2012 4:19 pm
Location: North West

Re: Hi :)

Postby BeeB » Fri Jul 06, 2012 9:38 pm

Hi FluppyPuffy I didn’t see your post before I replied (is that your dog by the way, gorgeous!).
Thank you :), I feel like I am making a bit of a fuss, but I just want a diagnosis now. I’m sure you and many others on here understand that though. I cried a little when all the tests came back negative, even though I knew they would. If there had been something there we could have begun to treat that.

To be fair I think the Dr knew that was the way I felt. Not that I really wanted the tests to show something, but I am sure you know what I mean!

I hope so, I feel like, and this feels awful because so many people have things going on that are much worse than the way I am feeling. But it feel like life kicked me whilst I was down. I was already suffering with anxiety and depression, then I became physically ill, then there was a whole lot of stuff going on at home very difficult to deal with. It didn’t feel fair that I had to deal with all that and still be strong and smile, when really I want to not get up again! Though really that’s not a good attitude to take, just have days like that I think.
I have a diary that I have been keeping, the Mr made me, but it doesn’t go back all the time, because I sort of thought it was normal. Not normal exactly but I guess I didn’t pay as much attention to it, and I haven’t always linked all the pain together. In the beginning I think I thought, oh I must have pulled something/slept funny or similar. I don’t know if anyone else has felt like that with FM?

I will have a look round and a read, I have been doing a little already.

Edit: Just thought I would add, the thing I am missing most currently is the ability to sit comfortably. It always feels like there's something digging in my lower right back.
"Mostly harmless," admitted Ford with a slightly embarrassed cough.
User avatar
BeeB
UKFM Newbie
 
Posts: 4
Joined: Fri Jul 06, 2012 4:19 pm
Location: North West

Re: Hi :)

Postby FluppyPuffy » Fri Jul 06, 2012 10:05 pm

Taking hubby with you is a good idea, even if he's just there for moral support. It sounds like this GP is being very thorough, retesting and looking into your full history, hopefully you will find your way to a dx with what they are doing :fingerscrossed: :fingerscrossed: :fingerscrossed:

What happens at a Pain Clinic seems to vary from area to area :facepalm: :facepalm: As a very general idea, they tend to have a variety of healthcare peoples in them providing advice and treatments to help manage pain more effectively. The people involved can include drs for providing new/different meds, counsellors/therapists to help with the emotional/psychological aspects of living with chronic pain, and other treatments like physio, acupuncture and other things that may help.

The way you're feeling and thinking is how most of us have felt and thought at one point or another along the way. Don't ever feel like you're making a fuss, what you're trying to live with is very real and very debilitating at times and it's more than understandable that you want to know what is wrong so you can start on some appropriate treatment to try and manage things. For some people, being told that there is a name for their problems can help rationalise things a little and help them find it a little easier to deal with.

With you already having the diary, if you can add something to it each day, it may help show if you have any patterns to your symptoms, if you have any triggers that can set things off as well as helping provide a picture of what things are like for you. All the things you're wondering about are what we have wondered about as well, as they could be put down to the cause of unexplained, chronic pain problems.
As a Public Moderator 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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Hi :)

Postby BeeB » Fri Jul 06, 2012 10:17 pm

He’s good moral support :), in fact he’s good in general. He doesn’t complain about anything, and is very calm and collected about things – doesn’t bat an eyelid. He’s not my hubby yet, but hopefully will be very soon, we have to keep rescheduling because of my Grans illness.

I think this GP is, I don’t want him to leave the practice before we get anywhere though. Even though he has basically said that if there’s nothing he can find there’s nothing he can do, but the fact he’s trying is good.

So is the clinic less about finding out what’s wrong and more with helping to manage it. I mean that would be helpful, but I would also like to know really what is going on.

If feels better having someone tell me that, because a lot of the time it does feel like fuss. Because people don’t go to the Dr’s, so my dad says, as frequently as I do. I’ve been there a lot over the last few years. It also, in a strange way, makes me feel less isolated knowing that people are thinking/feeling the same way as me.

My diary has the foods I have eaten, exercise I have done in it too. So I could keep a track as to whether it was linked to a food intolerance. Though it doesn’t look like it, since I cut out the things that affect my IBS and the other pain hasn’t changed.
Thank you for your answers, it really helps. I’ll keep updating if that’s alright? Although of course it might not be FM at all, but again thank you.
"Mostly harmless," admitted Ford with a slightly embarrassed cough.
User avatar
BeeB
UKFM Newbie
 
Posts: 4
Joined: Fri Jul 06, 2012 4:19 pm
Location: North West

Re: Hi :)

Postby FluppyPuffy » Fri Jul 06, 2012 11:28 pm

The Pain Clinic does tend to be more about managing rather than dxing, getting the answers tends to be GPs and/specialsts, so if your GP is still unsure after all his investigations, he may refer you on to a rheumatologist or other specialist he thinks might be able to help.

With the diary, note down anything at all that you think may be of help, no matter how minor it may seem. Sometimes it's the small and random things that can throw light on things.

It'll be good to hear how you go on with things, and it doesn't matter if it's not FM, we have a few people on here who found out that their problems were caused by something else but have decided to stay active on here just because of the support they have found on here.

I hope it's not too long for you to get the answers and treatment you need and deserve :blowkiss: :blowkiss: :blowkiss:
As a Public Moderator 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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Hi :)

Postby shazq » Tue Jul 10, 2012 1:53 pm

:welcome: to the forum Beeb :wave:
As a Public Moderator 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.
Fibromyalgia Awareness Day May 12TH.
User avatar
shazq
UKFM Veteran
 
Posts: 11449
Joined: Wed Feb 11, 2009 8:16 pm
Location: wrapped up under my duvet at home.

Re: Hi :)

Postby sharie » Tue Jul 10, 2012 2:34 pm

Hi Beeb,
I'm new on the forum like you and am also searching for a diagnosis. I too hit a brick wall with the medical profession for over 12 months (shunted from consultant to consultant and test after test) but am now seeing a rheumatologist for final diagnosis.
I can't give you better advice than the others but just wanted to say I know how you feel.
sharie
UKFM Member
 
Posts: 24
Joined: Mon Jul 02, 2012 11:00 am

Re: Hi :)

Postby Dorrie » Sat Jul 14, 2012 2:09 pm

Hi BeeB :-)

I am also new to the forum but it is so nice to have lots of support and help from everyone.

Like you, I have a problem with concentrating and am also forgetful of what I am saying. I have recently separated from my husband who was not very understanding of my diagnosis and did not help me with my stress levels, which in turn increased the problem. Since being on my own, I am managing to think a little better even though my other symptoms of FM are a major problem.

I have only just moved back to the UK and will have to start the process of telling my new GP about my FM symptoms once I have got settled in a new place. Lets hope he/she is well informed on this subject.

It is good to know your OH appears supportive of you. Keep positive and good luck. :-)

Dorrie
Dorrie
UKFM Newbie
 
Posts: 4
Joined: Wed Jul 11, 2012 10:18 am


Return to Where to Say Hello

Who is online

Users browsing this forum: No registered users and 2 guests

cron