About 10 years ago out of the blue my life changed. After a restless night with a lot of pain generally at that time in my back (spinal). I was put on pain killers which increased very quickly to help combat the pain, yet nothing worked. As months passed the pain spread throughout my body. I also suffer with arthritis and a lot of the pain was put down to that. I've tried spinal injections, steroids in my wrists, shoulders and even had arthritis build up remove from shoulder joint surgery which I was told will be done every other year or so and alternating each shoulder yearly.
Approx 6-8 years ago after a scan with a rheumatologist I was told I have arthritis and fibromyalgia. My condition had never improved and as time goes on there seem to be more and more problems, including bowel and bladder issues.
I have repeatedly told my GP about things going on that seem to have also fitted into this time frame of pain and on many occassions found myself telling my doctor about an issue where i'm told NO that's nothing to do with Fibromyalgia. To return 3 months later and question this again to be told i'm wrong. Another 6 months pass and I find more and more other people online writing about the issues I am trying to get through to my doctor. For instance loss of vision, blurring, gritty eyes.. When I asked my Gp she said no not fibromyalgia that wont affect your vision. I've been seen by optician and there is no signs of glaucoma, diabetes problems or anything to worry about. But they have noticed an increasing loss and frequent need to upgrade my glasses. Even within months of having a test.
I have raised this with my GP so many times and still she tells me fibromyalgia does not affect vision.. I have emailed her online websites from fibromyalgia research that show visual problems in fibromyalgia patients. Yet still she insists its nothing to do with it.
There has been times through my illness where I have spoken with my GP where she has admitted there was so little known about fibromyalgia they are still learning about it. Which I often felt during our consultations.
So, I am always left feeling I KNOW something is wrong, no one will listen.. My vision today feels very blurry like looking through cling film. My eyes are frequently mucky which I'm told to bathe with baby shampoo and I can buy drops from the chemist to help with the gritty feeling.
So where do we go when there is no where to turn? Who knows which specialist is best to see who understands fibromyalgia and can actually help?
I was diagnosed through the rheumatologist who I only see when I require surgery to remove build up in joints. I was never given a Fibromyalgia doctor, nurse.. I don't know what to do and where to go, I've approached my doctor so many times and always get the same reply.
I've spend the last 8-10 years on a cocktail of morphine and opiates to try to cope with the pain and everything else gets ignored or denial of its existence.
The eyesight is only part of the issues I have raised. I have also mentioned toileting problems and loss of sensations for both bowel and bladder problems. This continues today. Although I was given medications to help with these matters it was never looked into to see whats actually going on and again as time passes the problems seem to be getting worse. I don't want to lose total control or be incontinent. Why after all these years is there still no where to go and the lack of knowledge with this illness.
It's so frustrating living day to day being ignored.
Does anyone know where I can go to get any help with this.. ?
Written by
FancyTramp
To view profiles and participate in discussions please or .
I have so much distrust of what passes for medicne. Dr's need a good dose of their own medcine,, to me it seems more devisive than anything else,, they have to see the same problems comming through the door again and again and again,,, the eyes being a good example and still they spew forth the dismissive words we all know to be either lies or ignorance. I know which one my bets rest on. They are supposed to be intelegent people yet are incapable of seeing patterns,,,, I don't believe this for one moment,,, It's abuse!
We already suffer enough,,, and in silence or we are moaners.
Hi could you change your doctor? There are some brilliant ones out there, who will hopefully listen to you and advise accordingly xx
You could try looking online at your nearest hospital’s website. Sometimes you can refer yourself and it might be a way in to get referred on to other departments. If you could refer yourself to say, physiotherapy and you mention bowel and bladder problems you might get referred to a specialist nurse or dr in the hospital.
Hi FancyTramp. GPs know little about eyes, unfortunately. These days an optician (or out of hours the emergency eye dept of the hospital) is your port of call. Have you considered going back to an optician and setting out all that is bothering you. It is important that you get a clear diagnosis on what is happening to your eyes and that is the responsibility of an optician - referring you to the hospital if necessary. If you can't see properly there is risk to you in going about your everyday business, not to mention the potential risk of long term damage to your eyes.
On the basis of my own experience, there are a whole number of eye conditions which could be causing this. If it is caused by Fibro I can't say but, even if it is, it may well be that all that can be addressed is symptomatic treatment/relief? But you should get to the bottom of what is going on in the eye - there is no point in taking any chances.
Thank you for all the replies. I am about to get another doctor as my doctor left a week ago, but am yet to know who the new one will be. I am hoping a fresh look at everything may bring some help.
It is all very frustrating and I do feel we are left to just get on with it. Keep taking the pills, cant increase any more you are maxed so somehow its put up with it and shut up. Nothing more can be done. I don't understand why we don't get a Fibromyagia clinic or nurse or someone to help, They say our illness is very similar to MS, yet you have an MS nurse and clinic.
I know my other problems are related to the fibromyalgia, the way all these problems rolled off the back of one and other, a constant flow of health problems, but because they lack the knowledge of it, there is nothing they can do. It's not acceptable, these issues can't continuously be ignored until its too late.
I know they say there is more awareness to it, but is there really? The only awareness I see is from those who live this day to day. Medically there is very little understanding or awareness to what goes on in our everyday lives.
I have looked on the NHS website and found a link to Fibromyalgia which gives a number to a helpline. I am going to call them tomorrow and fingers crossed someone knows how I can get seen and sort out some of these other issues out. Fibromyalgia is a far bigger problem than 'just' pain, it's time the wake up and treat us properly.
When you add up the facts,, they see fibro paitents complaining of these issues everyday and they are unable to see common problems and patterns with fibro paitents,,, my mind boggles and it makes me so angry!
I think that .. like if it's diabetes .cholesterol. .or blood pressure ...and ..and .. is it always fibro..... .cos that would mean I have had absolutely nothing wrong with me for 10 years apart from fibro ...that would be a pretty amazing for anyone ..it drives me nuts seriously get someone to go with you too.... I literally have to think really hard 😵about what I'm going to say how I'm going to explain and one thing at time ...I have applied today ... very hot feel terrible 😷
How do you get through when no one listens or knows anything about it all.? I've waited over 3-5 years knowing my eyes are getting worse and every appointment I have I mention it over and over again to be greeted by blank faces. One of the women testing my sight said, isn't that to do with pain? I said Yes but there are other issues too. affects nerves too and you get them everywhere . She said No never heard of anything with eyes... after that all was then yet again ignored.They confirmed deterioration of sight and selected new glasses. I asked WHAT every 3 months? to no reply. They have no idea what I am on about...
Makes me wonder..... Do they care? or is it just a sale to them?
I think I need to find a fibromyalgia specialist but where or who are they? I've considered writing to some research professors in USA to ask where do we go... There is nothing out there. I seem to be always hit with the same problem.
Why is this taking them so long to learn there are so many that are suffering.. and nearly all are having similar problems and saying about this..
I have thought about just going to eye clinic at hospital, but worry they will think i'm wasting their time. What if I get there and they also know nothing about all this? Every time I get checked I hope someone has finally educated themselves and know something. But the last thing I want is to be blind before they get there.
Blind and incontinent, geez wont that be fun. Bah!..
I will call the helpline tomorrow and ask if they know. Someone has to.. surely.
Hi I've been told fibro don't effect eyes it's taken a year I've just found out that both my eye are going through pvd and my right eye has a small hole in it this showed up with a scan of the macula so go to eye casualty and get your eyes checked by them ive had four eye tests and no one picked it up you know your eyes are not right keep going till you find the answer your fibro friend Angela
Hello, I have a macular hole and dry eyes. I have an appt with the consultant next week - so feeling very nervous. I've also noticed that in this hot weather or when I'm going through a fibro flare my vision gets misty at some point in the day for a while. I was on amitriptyline for about 9 years which I think seriously affected my eyes - really hacked that the the gp never mentioned all the horrible side effects from this medication. Any advice about the eye problem? Thanks.
Make notes on a pad what question you want to ask consultant it is frustrating keep going till you r happy you have waited a long time for your appointment so don't b rushed good luck xx
Yes I've had 25+ years of fibromyalgia...it has made my eyes very bad (the muscles get weak and tired and laser surgery won't help as it isn't the eye itself it is the muscle)...I'm no longer allowed any pain meds apart from ibuprofen and paracetamol which I have to get myself and they do nothing...doctors refusing to send me to any further specialist due to awful pain in feet (possibly hyper sensitivity either due to diabetes or the fibromyalgia or even a trapped nerve but you would think they would check it out) it is so painful I can't even put sandals on. So yeah I'm there with you...I too have bladder issues and now where those pants they advertise on tv...I'm 42! When I get out of the chair I can barely straighten up to walk and hobble around the house. Once I've walked a few minutes I can sort of straighten up a bit but it is just painful constantly...at this rate I will end up in a wheelchair before I'm 45
Hi so sorry your suffering and basically being denied proper healthcare. It really is bad but I think it’s all about cost and they refuse to send anyone to see anyone about it to keep the waiting lists downs. I would keep a daily record of symptoms and ask to see a rheumatologist if you are denied access to one then go back to the drs and state you are prepared to pay privately could they please put in a Referal. It costs around £200 for first appointment then around £170 for s second. They can then refer you on to the NHS. Have you looked up Sjögrens or lupus. Also get a print out of all fibromyalgia symptoms tick them all off then get a print out of Sjögrens and do the same for lupus. When you see you rheumatologist ask if it is a possibility it’s any of the above. Also get your medical records including the opticians go through everything. If they ask why just say if you see a specialist you have your medical information to hand and just explain it’s for your own personal use to store away. I got mine a few years ago and I had to fight to get them. I found all sorts of things such as I was diagnosed with gerd but not informed. Get someone to go with you to support you and write notes or keep a record of everything on paper or in a diary I wish you the very best of luck. Hopefully you will get somewhere. Take care. 😀
I too get the eye problems you're stating , quite alot actually. I've tried numerous eye drops, eye washes etc etc ... The only thing that eases it although doesn't get rid of it is I get a soft flannel run it under the hot water and then softly press the warm flannel on my eye and keep repeating it for about 10mins on each eye throughout out the day.
I too also have bladder and bowel problems. I do now have bladder incontinence but I think mines also down not only made worse by the fibromyalgia but I've got endometriosis and after now my eighth surgery including a total hysterectomy it's left me with bladder incontinence.
I hear you're frustration as i had a good handful of doctors that I'd repeatedly keep going to see them telling them how much pain I was in and all the time I'd get "you're depressed, here's another tablet""
If it wasn't for my persistence and anger that kept me going I finally got through to a doctor who recognised that some of my symptoms were down to fibromyalgia. Not all of my problems are , I have a multiple of conditions going on, but I won't get into that now
But for my fibromyalgia I'm being sent on a pain course that was organised through my pain consultant at the hospital I'm under. It consists of physiotherapy psychotherapy, CBT, hydropool etc etc. As fibromyalgia is different for everyone it's going to be trying to help me cope with my problems that come with fibromyalgia , it won't cure it and I don't know if it will even help, but everything is worth any try and my god I've tried everything😩
Please don't give up , keep trying to find a doctor who understands, then try again and again, there are some out there who are really understanding
You will certainly have a huge response to your post. I think I'm correct in thinking everyone on this site feels frustration when it comes to the lack of awareness of this condition. I have a very good GP (who l can never get appointment with as he's so good) but even he only knows so much.
I don't think there are really specialists in just Fibromyalgia. I searched and paid to see someone, a pain specialist. It said on her profile it was one of her interests. All she specialized in was drugs.
As far as your eyes are concerned. It could be your medication that is causing the problems. I have come off all pain meds as my eyes have deteriorated. I use drops very regularly to combat severe dry eye caused by trycilic drugs. I have terrible photobia, sunlight and artificial light give me migraines. I now have to see an optician every 6 months.
I do believe things will change. It used to be the same with multiple sclerosis years ago but now everyone has heard of it. Sadly these things take such a long time. I wish you well and luck with your quest.
Think it's a case of dealing one by one with symptoms to get some relief.
Eyes. It is increasingly common. Pollution, crop sprays, screen use etc. Glyphosate is used as a dessicant on crops to dry them. Does it dry us out eating the residue or with it leaching into the water or air?
Regardless of cause you need the right drops. You GP should prescribe something suitable. If you need to use them 5x plus you probably need preservative free. Any extra additives can be irritants. I have tried loads and you should too. If after using eyes are feeling more irritated, likely the drops are not good for you. I have used some that make my eyes feel dryer!!??? Not good.
I use Thealoz Duo and they are the best I've tried.
Recently I tried Systaine Complete which sting slightly then settle. (Opticians sample) They have preservative so not keen to continue but alternating with my usual drops they were good.
I'm told preservative disappears on the eye. Diluted to become water with your own tears. If eyes too dry and/or using too often eye cant clear preservative and that is not good.
I suggest you do as other here do and that is learn all you can from others and your own reading and research. You owe it to yourself to be informed and do the best you can for your own precious body. Drs dont always get things right and when they don't it is us patients that have to live with the fall out. I'd rather read and learn and then when advised I can ask the right questions and if necessary say No Thank-you!
Remind your doctor that it is their duty to keep their knowledge current. Younger doctors are often far more up to date with current thinking, I hope your new doctor is a young one.
Totally understand what your saying and what a shame this is the case you have some people don't believe it at all and they just don't have the time to deal with us more complicated people so just push painkillers like drug dealers to shut us up me my self I stopped going find it pointless just got to suck it up and get on with it life really not easy I do think it is a postcode lottery and I am not bad mouthing the nhs because they try the hardest I hope one day life changes for all us suffers and the understanding of what we go thru my eyes are the same as you and my options said they was linked and some days my eye site fine others it's all over the place same with my tintus hope you got good people around you and life not to much a drag keep strong try to stay positive and the best of luck with your future x
Your eye condition sounds like blepheritis which is common in Fibro. Blurry eyes stinging gritty. Best solution for me was getting a dry eye mask (Amazon ) and use it daily then cut down to using once a week. It melts the oil that blocks tiny glands around your eyes. Hope this helps. Optician should have picked it up though.
I would suggest firing that GP and hire a new one. Fibromyalgia brings along a never ending list of problems such stomach, bladder, intestinal and neurological issues.
An excellent book is ‘Women and Fibromyalgia’ by Barbara Keddy, an ex nurse, who has fought the fibromyalgia battle for years.Even reading the Amazon reviews is helpful.
Last year I had to change my glasses prescription three times and believe this is not uncommon. As one optician said to me ‘ the eye is a set of muscles so of course fibro will affect them’.
Same as pegsmum I been told by opticians it's blepharitis . My GP told me stop wearing make up it's due to me not cleaning it off properly . Which is wrong then said my age . My opticians sold me a hot eye mask which has helped I do make sure I clean my eyes I never go to bed with make up on never have as for the incontinence of urine that's the coffee I drink need to cut down or go decafe . I'm not stopping my make up or coffee habit lol the younger GP in my surgery is really good and knowledgeable about fibromyalgia so I tend to speak to her when I have a problem. We are left to deal with it our selves it seems the normal xxxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does anyone else get lumps during a flare up?
Does anyone else get crazy night sweats?
Does anyone else get hot flashes when they've reached their limit?
