Well, saw a fourth GP yesterday. My first GP who'd sent me to the neuro has left, the second was a guy who clearly didn't care and told me all my tests were 'clear' and when I looked at the screen and asked why one was 'flagged' he said 'oh yes, your vitamin D is low', the third just sent me away with strong painkillers and now this one... She told me after looking through all my tests, MRIs, lumbar puncture (telling me that it's normal to have antibodies/O bands in the spinal fluid... er no its not I said) and telling me I probably have 'Fibromyalgia' and that's the 'road she's looking at'. Okay, I said, but can we please rule out other things?
So more tests for Lyme Disease (I've spelt this out over and over - I'm a fieldworker and spent a lot of the summer outdoors before I fell ill) although having known a few colleagues who've had Lyme Disease I doubt it's that. Coeliac Disease and.... Lupus. I told her I'd had an ANA test it was 'borderline' but she said they'll do another. I said I didn't mind how many blood tests I had - I'd do one every day from now til Christmas if they give me some kind of answer.
She suggested anti-depressants. I suggested a referral to a rheumatologist. She said 'we'll hold back on that'. I left the surgery, limping, exhausted and sat in the car and cried. I got home and ate cake... If I have coeliac disease I'm really done for - I live on cake.
Ah well... at least I fed the surgery pet vampire...
Sorry guys just offloading.
Written by
achydunlin
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My experience with Consultants has at best been poor, upsetting and my symptoms constantly ignored. Been poorly 3 1/2 years.
Diagnosed with CFS/ME &Fibro but told have symptoms over and above. I have taken the decision to go to the specialist Lupus clinic (after first sending my symptoms & some history). Alot of my symptoms fit with this but so many overlapping autoimmune conditions do. At least that will be diagnosed or illiminated.
Seems for so many patients not displaying symptoms of an obvious illness, that they get classed as complex & therefore not Dr's ideal patient.
So frustrating.
My own gp knows I self study medically (when my brain functions!), he supports me & will test/refer. This is largely because two other diagnosis I have were suggested by me & testing confirmed.
I'd say follow your instincts coupled with symptoms & don't be fobbed off.
Wow Jellynpain - 3 1/2 years! No wonder you're frustrated.
I think they don't like the fact that I research stuff.
It's very telling to me that you've suggested things and the testing has confirmed it.
You know your own body. I know I haven't felt 'right' for about a year and for the last six months I've slowly deteriorated. More and more symptoms appear, but they are so subtle and transient that I don't know what to think. All I know is that I don't feel 'better' despite all the painkillers and the vitamin D supplements.
I don't care how many tests I do, I'll just keep going and bothering them til I get an answer.
I have this as a result of a spinal cord infection and its hard to describe to anyone who doesnt have it I have beed told I have restless leg syndrome and researching it came across this article might help with your description of your pain
Just want to say I know how you feel as been thru similar experiences!. Keep fighting and push for Rheumatology referral, it could change your life. Good luckX
Hi docs can be so hard sometimes. I always try not 2 see my normal GP but sometimes it's just not possible. Drop in docs never understand my case and once they see I've lupus and a few other things they just blame that.. Really hope u do get sorted? I am having neuro problems at the minute an docs messed me around that much and there waiting list was awful I ended up going private now am back into the neuro books but on NHS but am on them, is that possible 4 u? Fair play 2 u standing up 4 yourself.. Hoping your cake was a chocolate one there my fav. Really hope things start 2 get easy 4 u somehow.
Well that useless doctor needs to do some reading on the effects of low vitamin d levels.
To bring your vit d up to optimum levels may alleviate many problems you are currently experiencing. It has even been suggested that to be low in vit d may trigger depression type symptoms
If you take high strength d3 which helps many its worth taking k2 as well to ensure the extra calcium actually makes it to the areas it is required.
There are many things now being written about (but not in the mainstream press) that are suggesting auto immune illnesses may be related to vitamin deficiencies or perhaps be a reaction to chemical substances building up in the body over time. Occuring either as a result of food additives or pesticides or possibly vaccine or drug reactions. In short things in use in the modern age that older generations didnt have exposure to. Vitamin deficiencies can occur even with a balanced diet if food does not contain enough nutrients. Either as a result of soil depletion or unwanted extras.
The oft talked of genetic susceptibility does not really sit well with me. These diseases seem to have occured largescale in a much shorter timescale than it would take for genetics to change in such a large proportion of the population.
Yes, I have read up on vitamin D and it's role in autoimmune disease flare ups. There does seem to be a connection somewhere - whether this is environmental or dietary related who knows? i.e. those with lupus or MS are too ill or sun sensitive for sun exposure and so end up with a vit D deficiency or does the vit D deficiency spark some of these conditions off? Interesting. and of course there's the other vitamins and the role they can play in keeping our immune system healthy.
Next time you have to visit the gp, have you someone that could go with you? When your feeling unwell it's hard to 'fight' your own corner. I'm lucky that I have a supportive family, my husband comes with me and I go with my daughter when needed, she too had a similar experience with the gp and I went to town on her surgery as my daughter was too exhausted to fight them. The result ended her being referred to rheumatologist that I see who has diagnosed her with a few auto immune diseases and still testing for others. Needless to say she has now changed surgeries. Also if you request to see a consultant with good reason they shouldn't refuse you. I hope you get help you need soon. X
My daughter has offered to go with me - she's seen me at my worst. I don't have a husband - I'm a widow. My parents are getting on and although very supportive, I try not to worry them so I don't tend to say very much.
Thanks for the support and yes, I will insist on seeing a rheumy if these next lot of tests don't show anything.
All my empathy. I was diagnosed with fibromyalgia years ago and I rapidly found once IT was on my notes everyone lost interest in my symptoms. Suddenly everything was fibro - as a result, none of my other symptoms were looked at until the damage from the auto-immune was permanent. :/
I can say hand on heart most Docs hate being told what to do and will immediately start trying to fob off and dig heels in. It is a weird catch 22 that you have to know what to look for in order to ask for tests but to ask you have to already have a suspicion and that means self-diagnosis. It's really hard :/. What I am concerned about is why a fibro diagnosis suddenly means no rheumy appointment. Fibro can be rather severe, or it can mask other symptoms.
It sounds like you might need another GP or another consultant who will listen to you. If you can hold out get the tests you can get done do at least you have a place to work from if you do. Good luck!
A possible reason why a diagnosis of Fibromyalgia stops a Rheumy appt is that the pain of it is not inflammation based so can be treated by painkillers and other things. I'm sure the pain is no less strong than inflammatory arthritis could even be worse?. Luckily I don't suffer from it but researched it recently for myself. Interesting if others answer your question!. Hope your not having to fight too hard for your health?. X
Aww honey, it's awful when you feel like your banging your head against. Brick wall..
Keep pushing for Rhumy it's your right just insist.. I had major surgery on my hip when I was 31 due to a birth defect and ever since then up until last June (I'm 51) I was treated for osteo arthritis..
In the interim ive had 2 hip replacements. After all surgery ive thought 'that's it, I'm going to be better now and be able to live a normal life' rhumy has diagnosed LUpus SLE, fibromyalgia, hyper mobility on top of the arthritis.
Still a long road to travel but at least I'm now hopeful of getting the medication to make me feel normal instead of the doctors visits that just made me feel like a Hyperchondriac
. I wish I had been more forceful 20years ago so please if you feel your being fobbed off insist on a referral. Good luck x
I really feel for you. I know what it is like to come up against doctors who don't seem to listen or want to help. I've been in the same situation for almost 15 years. I've gradually been getting worse and for years I have been accused of it being in my head. I, and my family know it isn't. I can feel it, they can see it. I finally got referred to a rheumatoligist last year. Only 14 1/2 years after the problems started! First visit was in September but I don't go back until April. I was seeing a dermatologist as I have ulcer like lesions on my legs. Didn't do anything for me but say he thought it was fibromyalgia. I argued I don't think it is. I have very few symptoms of fibro but a lot that aren't listed. I have also felt better when taking steroids. Prescribed on different occasions for Bells Palsy and Asthma but made me feel better over all. Steroids don't help fibro. He kind of got flustered and said no, no, that's right but maybe in your case they do! Discharged me without telling me! Only found out from my GP.
If you do have coeliac don't worry about cake. I was diagnosed with coeliac, but only by elimination diet, back in 2007. Found it hard at first but now there are a lot of gluten free products out there. Most of the cake is really nice, so are the biscuits. There is cake after coeliac!
Thanks for that reply though - yes I have a friend on a gluten free diet who told me to calm down and stop worrying. And, GloomyEeyore, I love your 'there is cake after coeliac' - that should be on a t-shirt!
I know exactly how you feel - I went from my early twenties to 39 going to the doctors saying I didn't feel right was aching always tired no motivation or energy going through diabetes checks and getting offered anti depressants like they were going out of fashion I was questioning my own sanity at the end, then I suffered a DVT (unprovoked) and then all these blood tests started getting done turns out I've probably had Hughes syndrome since birth developed lupus in my preteens the rheumatoid arthritis after that it really irritates me how quick the NHS are to try and dole out anti depressants and how against investigations into illnesses they are
Sounds like my internal medicine dr he always threw the depressed card at me... well yeah im sure we are all depressed at times specialy when our own drs dont care to to research our issues orjust want to play the wait amd see game...
It’s no comfort but you are not alone. I had been diagnosed with fibro for years then suddenly got hit with other symptoms and have suffered over two years with no answers yet. I was given one diagnosis by a rheumy and taken away by another.
I did put in a complaint about first rheumy, NOT because of diagnosis , but because he’d said he had carried out tests/ examinations that he hadn’t. I believe I’ve paid greatly for this, so be careful though, I don’t regret it , it was the right thing to do, I thoroughly regret the outcome. Ironically he was the one who said you can have something besides fibro you know. He acknowledged something else, my symptoms and since just fobbed off. If my bloods and tests were clear with no symptoms I’d be partying but of course, ongoing symptoms and struggles need an answer and help, but it’s a long road to travel, and hindered. ( in my case).
It’s a living hell at times, there’s only so much self help , but knowing own body and visible symptoms too now, I still will look for answers, but yes it’s hard and you need to offload, it’s mentally draining.
I hope you get answers , fitting answers and wish you all the best 🙏
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there my fav. Really hope things start 2 get easy 4 u somehow. 
Lupus diagnoses turns to fibromyalgia 
I've just been diagnosed with Pernicious anemia and vitamin d deficiency still waiting on more tests for lupus 
Update: Fibromyalgia?
Lupus and Fibromyalgia
