Skin Irritation, Sleep Disorder, Diziness, Lack of concentration and memory, anxiety and depression, sore musclea with twitching, bladder problems, visual problems (doublevision) optometrist says not an eye problem, Jaw pops out, IBS and gaul bladder removed, uncontrollable fatique and loads of skin irritation and sensitivity. She also has oste aphritis of the hips and neck, (chronic pain in the lower back both hips and both knees and kneck) . She has been complaining of this for years and we have only just found out about this condition this morning. When we suggested fibromalgia to the dr today, his attitude was "Its just a Label" we cant treat it so us calling it that wont help you. She has no quality of life. Mobility and thought, memory and skin problems have gradually become worse and worse. this has been happening for well over 10 years and bit by bit i have watched this break her emotionaly and physicaly. She finally decided to make an esa and pip claim as there is no way she can work in this much pain. The dr is been really unhelpful. when it comes down to individual symptons all we ever hear is that is just a wierd skin complaint or we dont know the test are normal. do they not understand that naming it is at least a start for the patient instead of hearing ummm thats not indicated in the latest bloods, mri etc ? This has been going on to long with no end in sight. My main question is what can we do now ?
Written by
powell
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I strongly suggest you find a new GP as soon as possible, we are not medics on this forum we all have fibromyalgia, a condition which is widely recognised if not fully understood, for a GP to dismiss your Wife and her distressing symptoms is unforgivable. I don't know much about the benefit system however Fibromyalgia is a recognised condition within the DSS. Wishing you all the best. Lou x
Firstly may I say what a lovely caring husband you are and how lucky your wife is to have you supporting her.
I think you should try and make an appointment with a different doctor in your practice. Many of us have been diagnosed by a Rheumatologist, so insist that your wife is referred to a consultant rheumatologist.
If you want to learn more about fibromyalgia symptoms then please look on fibroaction.org. and click on the heading "about fibromyalgia" at the top of the home page. There is also other information on this site about claiming benefits which you may find useful.
If you have any other questions then don't be afraid to ask... there is usually someone who can help answer them.
I hope you and your wife can find more helpful support and answers, xxx
I am so sorry that your wife & you have encountered such an uncaring unsympathetic doctor! Fibromyalgia is not shown in blood tests, as phlebo says ask to be referred to a rheumatologist they (hopefully) will show your wife the understanding she so needs & deserves, I know wher your doctor is coming from as it is just a label, but knowing what is wrong with your wife is half the battle, a lot of what your wife is experiencing is what I went through & still do but to a lesser degree but is still at a chronic level, re the skin itch & sensitivity which in turn contributed to a feeling of Clostraphobia & could not let my partner or family cuddle or hug me, I have a thyroid problem which is linked with Fibromyalgia also went on to get pernicious anaemia requiring B12 injections which actually helped ease some symptoms like skin sensitivity, irritability & even helped me get a little (minimal) restorative sleep I average 2 hours restful sleep any other sleep I get does not help waken as though I've not slept at all, most likely what your wife is feeling. sorry I've gone on a bit but if you can take any helpful information from my rambling, at leadt it's a step forward for you both. if you can get your wife to the swimming pool just to walk up & down will give her some exercise & help her get restful sleep, being in the water takes the weight off the muscles & joints so some physical pain relief time albeit temporary. Take care, hugs to you both x
Hi. fortunatly my symptoms are nowhere near as bad as you wife's but I also have a dr who won't listen to me. Last time i saw him he just kept looking at the list of symptoms that I had given him. I was dying to tell him I had ME. Eventually he said "I think you are suffering from anxiety" he then gave my some anti-depressants and sent me away. I went back afew weeks ago and saw another dr who prescribed me some different pills can't remember what thy are called ferrous something I was told I was low in something and that was making me A LITTLE BIT TIRED!!! (understatement of the year). a lot of drs don't recognize ME or fibro as real.
Hi powell
Welcome to our friendly fibro forum the best best place to come for advice and support.
Sorry to hear that your wife's doctor is unsympathetic towards Fibromyalgia and says there isn't anything that they can do about it. It is untrue as there are many things we can do to help learn to manage our daily lives with this illness including medications/treatments, positive attitude, exercise and most of all pacing. It can take a long time to get a diagnosis and I for one sent 20 years with chronic pain before getting it and there are many of us here that are sadly in the same position as your wife.
There is a whole section on our Mother site fibroaction.org dedicated to 'Dealing with Doctors' and I'd like to share the link with you as I feel changing GP is imperitive to your cause right now in order for any progression in possible treatments to happen. Like diagnosis it can take a long time to get the right balance of medications too.
Have a read and a mooch around our Mother site and please don't be afraid to ask us anything else you'd like to know.
I do hope you can find a more sympathetic GP because it sounds as though things are really bad for your wife. I would echo honor1a's comments, that there is often more than one thing going on. Have they tested your wife for low B12 I wonder? Sometimes it's possible to see a GP privately and pay for a consultation, just to get another opinion. Worth checking if you have a local private hospital? Really hope you get some help soon. Best wishes to you both MariLiz
Thank you all so much for your support and understanding. Sorry for the late reply but life for us both recently has been both exhausting, depressing and busy with medical appointments. My wife went to see a diagnostic physiotherapist who after reading her medical file and an examination sent a letter through to the dr for a referral to a Rheumy as he felt she had severe fibromyalgia. Hopeful she will be diagnosed soon and she will start receiving the correct treatment from the correct professionals. Certainly beats the dr running blood tests etc and all that ever comes back is "not sure or that's strange" do they not understand that from a patient point of view, knowing certain things can't be explained or it doesn't show on tests with fibromyalgia is a damn sight better than thinking your some sort of freak. Thank you all guys so nice to have support as apposed to confused and unhelpful frowns.
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