What I find to be incredible is the dismissive attitude of GP's regarding this condition. Flippant responses and shrugged shoulders seem to be the general reaction.
I have been suffering all of these symptoms for well over 10 years now and at times have felt as if I was losing my mind. Only through continued self research have I realised that this is the condition I am suffering from.
Despite that realisation there are still times when I can have a particularly severe episode which can be quite frightening.
I first presented with the symptoms following radio active treatment for a thyroid condition; maybe co-incidental??😱
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Rojo45
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I totally understand , I really don’t get why doctors are so dismissive of this condition , I actually got a very good doctor who diagnosed me eventually ,but my normal doctor didn t give me any indication I had fibro , and this went on awhile, is there another surgery you could try too get a doctor that would refer you too a rheumatologist? In the meantime take care x
hi Rojo45 I have had the same responses all my life and I have been I’ll with this & multiple other disabling illnesses. Since I. Was 11yrs old and I’m now 82yrs old, I now have a Doctor that recognises Fibro, I wouldn’t wish this particular illness on my worst enemy, they have now told me that they can do no more for me I no have scaleosis where. My spine is crumbling and going out of shape & is very painful daily, but I though if u can’t help me I’ll help my self , so I’ve started a Course of Killo, go on the web and read all about it, it claims to re build the bones and it has marine something in it, which we have in our body since birth therefor we don’t get wrinkly till we get old as then our body doesn’t supply it , I may not be explaining this properly , so please go on the website and make up your own mind about it , but i will certainly let you know how I’m getting on , really am sorry but I’m good at explaining things , let me me honestly your opinion ……. Thanking you Dee xx hope your day is a pleasant one xxx
If you feel your spine is crumbling and going out of shape, then I am pretty sure this is not just fibro. It sounds more like osteoporosis, which unfortunately strikes many older people who suffer with it.
I suggest you ask your gp for a DEXA scan, much the same as an xray, but it measures the density and strength of your bones. Also ask for Vitamin D and Calcium blood tests, if you are low you can follow a calcium diet with dairy, and have vit d prescribed so you don't need to buy it. Low vitamin d can cause bone pain where you tend to feel achy all over, and is often mistaken for fibro, and can accompany it too, a double whammy!
Depending on your results I would push for a referral either with a rheumatologist or osteoporosis/orthopaedic specialist.
Bone Health is a good forum here on Health Unlocked and is supported by the Royal Osteoporosis Society. There is a lot of information, especially about self help too.
I am not a doctor and I feel for you if you have fibro and osteoporosis, I suffer from both myself as well as a lot of autoimmune conditions, so I know where you are coming from.
I am sorry I have hijacked your post Rojo45 , just a gentle reminder to all that good vitamin d levels do help some of the symptoms of fibro.
I am also at a thyroid crossroads, radioactive treatment or surgery. I am holding off for now.
I also agree too that doctors and specialists should not roll their eyes and think you are faking it. They should know better in the way they treat us and how their attitudes affect our mental health.
Are you on optimal replacement thyroid hormones following your RAI? Low thyroid levels can mimic a lot of Fibro symptoms. I have underactive thyroid as well as Fibro and they definitely feed into each other. The thyroid group on Health Unlocked is excellent and well worth joining if you havent already. I think a lot of chronic, difficult to treat conditions are met with shrugs and "what do you want me to do about it" attitudes from medics. They cant cure us so their interest is very limited.
Have you had any recent thyroid blood tests from your GP? If so I strongly suggest you consider also joining the Thyroid forum. The members are extremely knowledgeable and can guide you. Do you take Levothyroxine following your RAI?
totally with you there, been suffering since 1993. Found it out for myself 14 years ago. Before that was beginning to think I was making it all up no wonder we get depression with it .
If they can't trouble themselves to identify a patient's condition then they may not even consider an appropriate specialist for referral. "It's probably menopause" one particular GP suggested!!! Wells that's ok then😜
The reason why I was sent to specialist was because I had high inflammation markers, have you had a blood test? Which has now found I have fibromyalgia which makes perfect sense. I also suffer with depression and anxiety and I had a breakdown to which I feel may have triggered this condition off.
My GP diagnosed me as having Fybro. When I asked to see a Rheumatologist they said that there was such a waiting list to see one and I would be low priority as there are many other rheumatology issues that would take priority. Also she said that all GPS had been briefed on Fybro and were able to diagnose it in house . So I would suggest telling your go that they should be able to make a diagnosis or if they aren't confident to do so refer you onwards . Sometimes they need a little push to remind them why they are there !! Depending on how confident you are to confront them . They are there to help you and not dismiss your concerns. Good luck 🤞
I'm sorry to here your suffering. I have come to the conclusion that doctors are either miss informed by the health authority or the the health authority are covering things up that is why there is so much miss information. Radiotherapy side effects are similar to fibro symptoms and the symptoms of the other labels and deficiencies out there. Please don't self diagnose I have had trouble with my neck face and shoulders for the last nearly two years and put it down to my fibro as I was getting the same attitude from my doc and didn't want to go back I found out yesterday I have head and neck cancer so please don't dismiss things and don't be put off by incompetent docs . Like I say the side effects of radiotherapy forms of chemical poisoning from certain industries ie steel works coal power stations chemical works cyanide plants and of course nuclear disasters but doctors won't link it with these kind of issues in certain industrial areas they put it down to poverty and poor malnutrition as they have done on teesside in the past a doc got struck off about 25years ago for bringing these issues to the media so it does make you think what lies are we been told and how much is getting covered up. Maybe look into radio poisoning rather than fibro
When my previous rheumatologist was on maternity leave and I first started getting symptoms of fibromyalgia, I had to speak to another one about medication. He basically said that anyone with fibre is a quack who has unresolved issues stemming from their childhood. I was like, "Excuse me?" I'm seeing a new rheumatologist next week and hope that he's decent.
I know how you feel about the severe episodes. I had one a few weeks ago and it was absolutely terrifying. I'm really scared that I'll get another and won't be able to cope again.
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