HealingWell
Search Close Search
☰

Un-diagnosed but the Doctor is not listening!

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/28/2010 1:32 AM (GMT 0)
Has anyone else had this problem?
I have shown symptoms now of CFS / Fibro now for at least 3-5 years, each time I go to the GP they say 'I can't have it because I couldn't be able to parent my children'.

I don't think for 1 minute she realises just how little I do, fair point my husband does work and I am left to fend for the children myself BUT it is hard, I hurt A LOT, I sleep A LOT and when finally he has a day off (Weekends) I sleep in until 2pm easily (usually, though it's later!)

I am in severe pain, fingers, toes, feet, ankles - In fact it feels like I have pulled every muscle in my body!
I am so tired, weak, lack of energy, have frequent migranes etc.

Anyone else had problems in reaching a diagnosis?

I am in the UK.
Posted 12/28/2010 2:09 AM (GMT 0)
Hi, Busymumof5,

Most of the people I know in the US who have fibro were diagnosed by a rheumatologist. My NP diagnosed Fibro and then referred me to a rheumatologist for confirmation and treatment.

Maybe you need to see another GP. You have to be so tired of the suffering by now. Is it possible for you to get a second opinion, or to see a rheumatologist? So sorry you are suffering. Hang in there and don't give up. You just need to find a doctor who listens and is familiar with fibro.

V
Posted 12/28/2010 3:03 AM (GMT 0)
Wow, this doctor must not understand Fibro at all! I raised my kids with it, just like a lot of people on this forum. It's not that you CAN'T do things, it's just that you HURT like all get-out if you do! I did things then that I wouldn't dream of doing now, simply because they had to be done, my husband was at work, and the kids were little. But I paid a heavy price in pain. Sounds like you are, too.

It just takes one good doctor and the pieces will start to fall into place. Mine is an internist/allergist, of all things. I hope you find one soon.

Debbie
Posted 12/28/2010 5:34 AM (GMT 0)
Him Busymum, and welcome!  Well, I think you need another doctor!  I raised three children while dealing with fibro.  I was diagnosed my my board certified Internist.  Your doctor doesn't seem to know much about fibro so you do need one that does and also treats patients with fibro.

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibro and you will learn a lot there. 

 

I'm glad you found us and joined our family.  I'm looking forward to getting to know you better.  Hope to hear more from you soon.

 

Sherrine

Posted 12/28/2010 8:28 AM (GMT 0)
Hi Busymum and Welcome to the Fibro Family!

I will agree with Sherrine and others...your doctor is not educated on Fibro! It's that simple. Please do seek out a new doctor and You interview Them to see if they suit the type of treatment you seek. You do need someone who understands fibro but most of all who will actually listen to you. Just because a doctor has the title on their door doesn't mean they are good. It means they spent a lot of years in school and passed the exams. ;-)

Keep in touch..
Chutz
Posted 12/28/2010 3:04 PM (GMT 0)
Hello Busymum. Welcome to our forum. It sounds like you definitely need a new doctor. your doctor is so sure of herself, then tell her you want to see a rheumatologist and that if she is so sure she is right, she shouldn't have any problems proving it. I am a mother of one, and it is hard. It's even harder with more children. It doesn't mean that we CAN'T do it. It just means that we have a hard time doing it. I really hope it all works out for you. Keep us updated.
Posted 12/28/2010 4:33 PM (GMT 0)
Thank you everyone for your help and advice!
I've been for a nap today so feel 'better' although everything still hurts, shoulders and feet are the biggies but everything aches - I feel 90!

I'm not quite sure where to go for a diagnosis because we live 'out in the sticks' the gp surgery only has around 5 doctors and our doctor is actually the best there...!!
No other Gp surgeries will take us on because we are not in their ''catchment area''

I feel like hitting my head on a brick wall!
I had to get up this morning (my husband had a meeting with work) and I felt like screaming after he had left.. having 5 young children (6 year old, 4 year old, 2 year old and 10 month twins) I felt so drained almost like disabled!
I did get up to get them drinks / food and felt so dreadful, every tiny bit I moved hurt and just feeling so weak and crappy :(

I would like to know for sure if I have this, - IF I don't .. what else might show simular symptoms? (My HB was checked and is in normal range now.. before when I expressed my symptoms, the anaemia covered over and they used that was why I was feeling like this, so now I am not anaemic and still feel like this.. there HAS to be another explanation)

Thanks girls, x
Posted 12/28/2010 5:35 PM (GMT 0)
As I suggested before, read Fibro 101...the first thread on the forum.  There are links to Symptoms and a link to What Else Could It Be.  It is important to learn all you can about this illness.

 

I'm sorry you are having problems with finding a doctor that treats fibro patients.  They ARE hard to find.  But if you find one, and don't have fibro, they can still treat you for what you do have.  There are links in Fibro 101 about finding doctors in your area...mainly from university hospitals.  Here is that link.  Scan down until you get to the United Kingdom and go from there.

 

http://en.wikipedia.org/wiki/List_of_university_hospitals

 

Sherrine

Posted 12/28/2010 7:07 PM (GMT 0)
Thanks, I've looked at the list!

Do I ask my gp for a referral? What if she says no? What then :(
Posted 12/28/2010 7:48 PM (GMT 0)
Well, hopefully your gp will refer you.  Perhaps print off some info from Fibro 101 and show your doctor why you think you might have fibro.  Maybe print out the list of symptoms and circle the ones that you are dealing with.  If your doctor really doesn't understand much about fibro, they would probably refer you.  If not, my next suggestion would be to get a different gp...one that would work with you.

 

Sherrine

Posted 12/28/2010 7:51 PM (GMT 0)
I did that before!
I had a photo of the human body with symptoms next to it, I put green dots next to the ones I had, Red next to the only 2 I didn't and a yellow for 'sometimes'
I gave her the picture and she instantly just dismissed the idea.. because I have so many children to look after etc..
She said I would be bed bound, not able to do anything!!
Posted 12/30/2010 8:37 PM (GMT 0)

Wow I think that Doctor would make me really mad! When I first went to my Doctor I felt the same way. Exactly what I told her that I feel 90. She did a full blood work up and I came up with positive ANA so she sent me to a rheumatologist. He ran lot's of tests then like 2 months later all the muscle aches started and the energy was sucked! right out of me. He suspected Fibro and started me on cymbalta and tramadol. As far as kids go I have a friend who has fibro and she just had a baby. I am watching my 2 year old grandson everyday. You can't just stop life. Your Doctor is not very smart. I sure hope you get the help you need (((HUGS)))

 My heart really! goes out to you with all those tiny children. I have to have my husband here to help me with one. wish I was near you to help.

Posted 12/30/2010 10:33 PM (GMT 0)
Would it possible for your husband to go with you to your next doctor appt.? He could back you up and also add what he has observed and ask that she get to the bottom of you troubles?

When we were still in the military, my gyn dr was not listening to me. He was chalking it up to the stereotypical housewife that has too much time and lots of complaints and just needs a valium or two to make her go away......... My mood swings were horrible, come to find out I was starting menapause at 28 and had a cyst on my ovary. My husband told the dr to either find out what was wrong or to take me home with him. (LOL) Surpisingly, he listened to my husband and started running all kinds of tests to get to the bottom of my problem.

I can not imagine the work load you have with children so young and being in constant pain! (My kids are grown and I do not think I could have raised them alone during my husbands deployments with the fibo.) I hope you get answers soon.
Posted 1/1/2011 10:20 PM (GMT 0)
Thanks ladies!!

It's funny you should mention tramadol, I took some last night for a migrane I'd had for 2 whole days and the aches didn't go completly but it was like a weight lifted, my limbs didn't feel heavy to lift and although the pain was still there, it wasn't half as bad as was it was!!!

Today I had a bad day.. I didn't get to sleep until 7am!!! I then woke at 12 mid-day and felt shocking, stayed up until 6pm then had a nap until 8pm!

I have had a 'me' day today, I've led in the bedroom whilst my husband was downstairs tending to the children, If I didn't know better I would of said I felt paralised with pain, aches and just heavy-ness feeling!

I am a caffeine addict, always on coca cola and until I ran out the other day I didn't realise just how much it helps me get through a day, which is NOT good for my weight BUT it's an addiction because I need help with getting things done etc.!

I will go to the doctor again, taking my husband in to back me up on a few things, if she just doesn't listen again I don't know what to do :(

She has no idea how little I do now, and as for a career, I don't think I have that chance now, only 25 years old and feel immobalised, paralized, sick of living like this :( xx
Posted 1/2/2011 3:35 AM (GMT 0)
I know exactly how ya feel girl. It gets so frustrating doesn't it? rolleyes   You have! to have a Doctor that listens and cares. Ask her if she can reffer you to a rheumatologist. ((((HUGS)))))
Posted 1/2/2011 9:39 PM (GMT 0)
Hi Busymum,

I'm new here too.  Just wanted to say I hope you feel better and get the answers you need really soon.  I know it is frustrating to have doctors that don't listen or take you seriously.  I think the gp I have now is wonderful and will listen when I take my list of symptoms to her.  She has always been attentive but I have had the opposite from drs int he past.

Wishing you the best!

Posted 1/3/2011 4:09 PM (GMT 0)
Hi Busymum, I just wanted to welcome you and let you know you are not alone in your frustration. I truly hope you get some answers and some much needed relief soon. Keep us updated.
Posted 1/3/2011 4:20 PM (GMT 0)
I don't know the answer to this as so many doctors think that we do not NEED any pain relief or our pain is not as bad as we say.  I had a PM doc tell me that and he even said he doesn't treat patients like me, I was too active and not handicaped with pain.  This doc wanted me to exercise with the bands and the rheumy that I saw said to NEVER use the bands as it would cause more pain.

At what point is it called doctor shopping?  I hear about people getting red flagged for doc shopping. 

I do not take narcotics as I want to wait as long as I can before I even think about it.  OOPs I did get fieronol with codine once and didn't like it at all. 

As I said, I don't really know the answer but I wish it was different

✚ New Topic ✚ Reply