New here with questions

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

New here with questions

Postby taraloum » Sat Oct 18, 2014 12:01 am

Hi,
I'm Tara and am new to this site.

I haven't been diagnosed with fibromyalgia yet as my doctor wants to me have a b12 blood test and a ultrasound but she has said she doesn't think it will bring anything up but wants to be sure.
I am sure I have FM because I have a lot of the symptoms associated with FM including fibro fog.

I have a few questions.

During your diagnosis did you get sent for countless blood tests and a ultrasound?

Does anyone have any way of stopping pain in knees, I have been prescribed tramadol for the pain but it doesn't take the pain away in my knees for long, a hour after taking the tramadol the pain will be back and always comes back to my knees first.

How do you cope with fibro fog? That is the worst thing at the minute. I can be in a full flow conversation and suddenly I will forget the next word that I was going to say. I have also forgotten things like I have food in the oven and such.

The other really bad thing is the tiredness, no matter how early I go to bed I am always tired the next morning, can anyone give me a solution to stop this or at least make it better?

What happened directly after your diagnosis, did you get reffered to a specialist or did the doctor prescribe you different medication meant for FM?

Hope you don't mind me posting on here seeing as I haven't been diagnosed yet but like I said, I have many of the symptoms associated with fibromyalgia
taraloum
UKFM Member
 
Posts: 18
Joined: Fri Oct 17, 2014 10:14 pm
Location: Wales

Re: New here with questions

Postby Fibroised » Sat Oct 18, 2014 4:14 am

Hi Tara,
Firstly sorry you are going through this.

Fibro is diagnosed by a process of elimination because there isn't a specific test which diagnoses it. So blood tests and scans are normal. Anyone diagnosed with it will have gone through a long series of those. Your doctor will probably then refer you to a Rheumatologist or Neurologist or both who should hopefully prescribe proper meds for you.

In the lead up to my diagnosis I had every organ in my body scanned. Pints of blood taken, it feels like. An MRI. XRays. Eyes checked. All came back clear.

Do you have specific points in your body which hurt badly when touched like in the fibro body guide? This is a good indicator, but not a total proof.

The fibro fog is awful and mine sounds exactly like yours. For example today I went to the freezer to look for a letter I needed to reply to!!! I have often made a cup of coffee, only to find that I had just made one previously!!!

Everyone is different regarding how they adapt to meds. I was on tramadol for 6 months and it was totally useless!!! Never did a thing for me!

The tiredness is killing, and personally I can't find anything to ease it. No matter how much rest or sleep I get, I never feel any benefit.
It is not a nice illness, and I hate it when I hear of someone new getting it. I wouldn't wish it on anyone. Your doc though sounds great as not all doctors are that familiar with FM and you are lucky. My other half "diagnosed" me from googling every symptom and it kept coming back to fibro. That was when I realised that the various points in my body which hurt to touch were actually significant. I had put it down to age!!! Plus I suffer from arthritis, so I didn't think they were any way special. We both went to my doc - him so I wouldn't forget - and gave him the total list of symptoms. He then immediately said he felt it was fibro but had never come across anyone with it before. That started the ball rolling, and after 3 months I wwas properly diagnosed by a Rheumatologist.

The best of luck with your tests, and remember that we are all here for you.
Soft hugs xxx
Last edited by FluppyPuffy on Sun Oct 19, 2014 3:51 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
Fibroised
UKFM Member
 
Posts: 33
Joined: Sun Feb 23, 2014 10:43 am

Re: New here with questions

Postby dazzleship » Sat Oct 18, 2014 8:07 am

hi Tara and welcome to the forum here

first of all I think it's a good thing that your GP is willing to do tests to make sure your diagnosis is correct. sounds like you've got a good GP which can only help :-)

in my case:

I started having random pains all over my body and after a couple of months of this I went to my GP who suspected fibro and sent me to a rhumatologist. the rhumatologist pressed various parts of my body (all of which really hurt) and confirmed fibro.

then I was sent back to my GP who prescribed various medications all of which didn't have any effect on me (amitriptilene, nortriptilene, and later tramadol and lyrica both of which made me like a complete zombie). for a while I was only taking co-codamol as and when I needed it for the pain - last few weeks I've been on gabapentin which my GP says is my last resort. so far no zombie-like effects :-) but equally it doesn't actually seem to help with the pain much.

I've had blood tests a couple of times since my diagnosis and they haven't shown anything other than fibro.

I've never had an ultrasound or MRI or anything like that.

I Too get terrible knee pain so I sympathise but afraid I don't know how to stop it. in my case I'm personally not convinced that it is down to fibro (I have hypermobile joints so I'm inclined to think that's what gives me my joint pains) but I'm waiting to see a rhumatologist again as my GP has decided I should go back as things have got worse. not sure what will happen at that appointment.

have you tried a TENS machine? they don't seem to suit everyone but I personally find it helps a lot with the muscle pain and cramps in my legs.

yes the fibro fog is terrible :hugs: I also forget words mid-sentence or sometimes say the wrong word (usually something that begins with the letter of the word I actually want :roll: ). I don't have any coping tips other than try not to let it stress you if you can -as stress makes everything about fibro worse.

for tiredness - again there isn't really a magic solution I'm afraid. try to pace yourself, do bits at a time, like if you have a chore to do in the house do a bit of it and rest for a while then continue. things like that, to try and conserve energy.

good luck in your fibro journey.
dazzleship
User avatar
dazzleship
UKFM Member
 
Posts: 460
Joined: Fri Jun 20, 2014 10:40 pm
Location: scotland

Re: New here with questions

Postby Angie Baby » Sat Oct 18, 2014 10:44 am

Hi,I too suffer with fibromyalgia, and I haven't had a good night's sleep since 2008. I've been medically retired from work. I've had two operation's on my spine. In 2009 and 2010. I'm in a wheelchair now because walking is too painful. It's like walking on broken glass. I've said to people that for them to understand the pain I'm in, is too put a small stone in both shoe's and try to walk around all day everyday! I ache all over, I have cortisone injections in both knee's and also my left shoulder. Not too mention the hot sweats! Just getting out of bed and getting a shower is so painful! I have a mobility scooter so that I can have some independence. My husband Al, is now my carer, I cannot manage with out him I wouldn't be able to cope. :-D
Angie Baby
UKFM Member
 
Posts: 22
Joined: Sat Sep 20, 2014 9:37 am

Re: New here with questions

Postby taraloum » Sat Oct 18, 2014 1:06 pm

Fibroised wrote:Hi Tara,
Firstly sorry you are going through this.
Fibro is diagnosed by a process of elimination because there isn't a specific test which diagnoses it. So blood tests and scans are normal. Anyone diagnosed with it will have gone through a long series of those. Your doctor will probably then refer you to a Rheumatologist or Neurologist or both who should hopefully prescribe proper meds for you.
In the lead up to my diagnosis I had every organ in my body scanned. Pints of blood taken, it feels like. An MRI. XRays. Eyes checked. All came back clear.
Do you have specific points in your body which hurt badly when touched like in the fibro body guide? This is a good indicator, but not a total proof.
The fibro fog is awful and mine sounds exactly like yours. For example today I went to the freezer to look for a letter I needed to reply to!!! I have often made a cup of coffee, only to find that I had just made one previously!!!
Everyone is different regarding how they adapt to meds. I was on tramadol for 6 months and it was totally useless!!! Never did a thing for me!
The tiredness is killing, and personally I can't find anything to ease it. No matter how much rest or sleep I get, I never feel any benefit.
It is not a nice illness, and I hate it when I hear of someone new getting it. I wouldn't wish it on anyone. Your doc though sounds great as not all doctors are that familiar with FM and you are lucky. My other half "diagnosed" me from googling every symptom and it kept coming back to fibro. That was when I realised that the various points in my body which hurt to touch were actually significant. I had put it down to age!!! Plus I suffer from arthritis, so I didn't think they were any way special. We both went to my doc - him so I wouldn't forget - and gave him the total list of symptoms. He then immediately said he felt it was fibro but had never come across anyone with it before. That started the ball rolling, and after 3 months I wwas properly diagnosed by a Rheumatologist.
The best of luck with your tests, and remember that we are all here for you.
Soft hugs xxx


Hi,
I do have certain points on my body that hurt when they are touched, some days it can just feel a bit achy when they are touched and other days it can leave me in agony for hours or even day. These are on my shoulders, to the bottom but in the middle of my back, my arms (sometimes), my knees and my the side of my hips but more than the places I've just mentioned hurt on a daily basis.
I am finding the fibro fog just as bad, if not worse than the pain. Its fustrating when I forget my words and dangerous when I forget about cooking food. I often forget to put the right books in my college bag etc.
My doctor has been great but its getting to be annoying that I don't have any form of a diagnosis yet as this has been going on since June and I don't want to be on the tramadol for too long as I don't want to become dependant on it or addicted to it.

Thank you
soft hugs to you too xxx
taraloum
UKFM Member
 
Posts: 18
Joined: Fri Oct 17, 2014 10:14 pm
Location: Wales

Re: New here with questions

Postby Theresa34 » Sat Oct 18, 2014 1:08 pm

I was diagnosed with psoriatic arthritis last year by a rheumatologist. Over the months since diagnosis last year, I was having a lot of pains and aches. I put it down to the arthritis. Then in Jan this year it go so much worse. It felt like I had constant flu. I saw my rheumatologist in Feb this year who noted down my symptoms, checked my joints and did the pressure test for fibro. That's when I was diagnosed. I had xrays last year for the arthritis, all clear. Then around Dec last year mri on my back, sacroilic joints and neck due to lots of pain. All clear! It seems the lower back pain over the years were due to fibro. So I guess looking back there were signs of it but it all basically hit on one big go in Jan this year. I am now on Amitriptyline to sort out my insomnia and also reduce pain, also on gabapentin for similar thing, c
Vitamin D as we fibros are usually deficient in it and I was very low, and on Levothyroxine for my thyroid. I used to take loads of painkillers everyday but I don't anymore. The two meds I take for sleep is really helping with the pain. I am not completely without pain, but its manageable. I also have cfs attached to my diagnosis which is what I think I've been having this past week. Extreme exhaustion and a bit achy. I'm still learning about my body nowadays. Havent experienced fibro during autumn and winter so I will have to see jow my body reacts to those days. On my good days I can exercise and clean the house top to bottom. I try not let this condition get me down. I've got 3 kids to take care of which keeps me pretty busy. When they're at school I do the housework and rest inbetween. I try to pace myself as best I can.

Fibro fog is worsening for me. My head feels empty! My memory is so bad I have several reminders on my phone for things incl taking my meds. I forget words, i jumble them, I put the wrong word i the wrong sentence. I hate it. I used to have a sharp memory. Its more short term memory at the monent. I can remember some long term things for now.

I too get knee pain. Usually my right knee. Although it did swell up due to arthritis last year, and has never quite been the same again. The rheumy checks it when I see him and the join seems fine. When its too painful to walk with it, I use a soft knee brace. It helps immensely! Only problem with it is that it can get quite sweaty! Lol But it works great x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
UKFM Member
 
Posts: 776
Joined: Fri Feb 21, 2014 10:44 pm

Re: New here with questions

Postby taraloum » Sun Oct 19, 2014 12:06 pm

Thank you :) I hope that you carry on being able to manage things the way you are. I am going to mention the possible use of a knee brace to my doctor (written it down to remember lol) as many days I can barely walk without being reduced to tears

Theresa34 wrote:I was diagnosed with psoriatic arthritis last year by a rheumatologist. Over the months since diagnosis last year, I was having a lot of pains and aches. I put it down to the arthritis. Then in Jan this year it go so much worse. It felt like I had constant flu. I saw my rheumatologist in Feb this year who noted down my symptoms, checked my joints and did the pressure test for fibro. That's when I was diagnosed. I had xrays last year for the arthritis, all clear. Then around Dec last year mri on my back, sacroilic joints and neck due to lots of pain. All clear! It seems the lower back pain over the years were due to fibro. So I guess looking back there were signs of it but it all basically hit on one big go in Jan this year. I am now on Amitriptyline to sort out my insomnia and also reduce pain, also on gabapentin for similar thing, c
Vitamin D as we fibros are usually deficient in it and I was very low, and on Levothyroxine for my thyroid. I used to take loads of painkillers everyday but I don't anymore. The two meds I take for sleep is really helping with the pain. I am not completely without pain, but its manageable. I also have cfs attached to my diagnosis which is what I think I've been having this past week. Extreme exhaustion and a bit achy. I'm still learning about my body nowadays. Havent experienced fibro during autumn and winter so I will have to see jow my body reacts to those days. On my good days I can exercise and clean the house top to bottom. I try not let this condition get me down. I've got 3 kids to take care of which keeps me pretty busy. When they're at school I do the housework and rest inbetween. I try to pace myself as best I can.

Fibro fog is worsening for me. My head feels empty! My memory is so bad I have several reminders on my phone for things incl taking my meds. I forget words, i jumble them, I put the wrong word i the wrong sentence. I hate it. I used to have a sharp memory. Its more short term memory at the monent. I can remember some long term things for now.

I too get knee pain. Usually my right knee. Although it did swell up due to arthritis last year, and has never quite been the same again. The rheumy checks it when I see him and the join seems fine. When its too painful to walk with it, I use a soft knee brace. It helps immensely! Only problem with it is that it can get quite sweaty! Lol But it works great x
taraloum
UKFM Member
 
Posts: 18
Joined: Fri Oct 17, 2014 10:14 pm
Location: Wales

Re: New here with questions

Postby FluppyPuffy » Sun Oct 19, 2014 4:37 pm

It's not unusual to find yourself being sent for numerous tests, scans, x~rays etc as part of the dx~ing stage. Due to the vast number of symptoms that can be associated not only with FM, but also with conditions such as RA, MS, Lupus, and with there not being a definitive test that shows any sort of indicators for FM, it has to be done by a process of elimination of other possibilities, and once they have been discounted, that is when FM is arrived at. A dx may be made by your GP based on the results of your tests etc, or

There doesn't seem to be any way to stop any of the hurtys associated with FM, the best we seem to be able to achieve is reducing it to some degree, taking the edge of things. For some, using something like an ibuprofen gel, or arnica gel can help bring some easing at times. Applying heat can help too, such as heated wheaty bags or hottie botties, and as has already been mentioned, TENs can be effective, not just on the knees, but also other areas of the body.

How to cope with the Fog.....not an easy question to answer no matter how many years you have been part of the club. In the early days it can be, and is extremely frustrating and worrying, at times making you wonder if you are losing your mind. A good number of us use our phones to set reminders for things, as a timer when needed, and as a general replacement for the minds/brains we had pre~FM. It's not infallible, but does help ease a little of the worry. Losing track of where I am in a conversation happens so often now that it has become almost the norm now. Not ideal, but approaching it in this way just helps make things a little easier for getting thru the FibroDays. And on the odd occasion, when I'm slightly more alert, when I forget the word I was going to use, I will throw in something random instead, then watch the expressions on the faces of those I'm talking to :nono: :nono: :nono: :nono:

And the fatigue :sleep: :sleep: :sleep: :sleep: Another of those problems that we're all searching for the ultimate solution to :facepalm: :facepalm: :facepalm: I have the CFS card as well, so finding the right balance between activity and resting so that I don't use what little reserves I do have up too quickly is a constant juggling act, and unsurprisingly, my juggling skills aren't improving, if anything they're going backwards faster than I was ever able to get them going forwards :facepalm: :facepalm: :facepalm: The way most of us try to manage this is with pacing ourselves and ensuring that we take plenty of rests in between doing things. When doing some form of activity, the idea with pacing is that you stick to doing something for a particular amount of time that you can manage without making yourself feel too uncomfortable. It's a bit faffy and annoying at first, but once you find your groove it can help make a difference.
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: New here with questions

Postby Theresa34 » Sun Oct 19, 2014 8:24 pm

This is the brace I have although got mine off ebay http://www.amazon.co.uk/Body-Tec-Adjust ... ab_pd_mw_2
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
UKFM Member
 
Posts: 776
Joined: Fri Feb 21, 2014 10:44 pm


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 7 guests

cron