Hi everyone, I’m new here. Thank you in advance for reading this long post!
I have just been given a telephone diagnosis of fibromyalgia. This is following 3 months of pain, IBS and kidney pain for which they cannot find a cause.
I have been tested for RA, my ESR and CRP results are slightly raised. But all the GP’s have concluded without seeing me that it’s fibromyalgia, I guess because I have a history of anxiety and depression.
I have been shielding during lockdown and have been feeling pretty positive. I have been trying to use my time effectively and planning for a better post lockdown future.
However in the last 2 weeks my symptoms have become more intense. They include:
Tingling around my eyes,
Headaches,
Pressure sensation in both temples but worse on my right side,
Scalp tenderness on the upper right side of my head,
Bulging, pulsing sensation in temporal aorta along hairline on right side of face above right eye,
Blurry vision,
Chest pains (stabbing and dull ache but predominantly left side of chest)
High Blood Pressure,
Swollen legs and ankles with pitting.
In February I was being checked for a suspected arrhythmia caused by medication I was on which has now been stopped. I am only 44, but have a family history of fatal cerebral brain haemorrhages that may indicate a genetic predisposition to temporal arteritis.
I have not yet had the arrhythmia checked due to lockdown. This week alone I have had paramedics out and a further incident where I had to attend A&E following a call to 111 who advised me to go in because my BP was so high. I did not have a history of hypertension before this.
On Thursday afternoon I went for a walk, I was with my son and we were only out for 5 mins before I had to turn back due to worsening chest pains, racing heart, palpitations, dizziness, sweating. On Thursday night I took 1 300mg aspirin to see what would happen. I’m not allowed to take aspirin because I have gout. I was previously taking ibuprofen and paracetamol which did not help.
Since Thursday night 75% of my pain disappeared and my BP has started coming down from 183/114 to 150/100. The pulsing sensation in my temporal artery on the right side of my face has also stopped.
Am I going crazy? I’m being told by my GP’s that I must be anxious which I do not feel like I am. I also do not feel depressed. Could this be something else? The GPs no longer want to discuss this with me and feel that I just need to take the medication prescribed, but I’m flummoxed by the aspirin and how most of my pain has now gone.
Any insight would be greatly appreciated.
Thanks
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melby76
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Hi melby, nice to meet you No one here is medically trained to give a diagnoses I'm afraid. But speaking from my own personal experience of suffering from anxiety and panic attacks my whole life and fibro for about 35yrs. I would say you sound like you suffer from anxiety. Which will make your BP sky rocket it does for me. It will also make everything you feel and to be honest things you may think your feeling a 100 times worse. That includes your Fibro symptoms I'm afraid.
You may not be aware but you can lock your posts to this community only if you wish. This means not everything you write will be read by every one on the Internet. In places like Google, FB etc. Take care and I hope you enjoy your weekend xx
Thanks. I still disagree though. I don’t feel anxious or stressed. I don’t suffer from panic attacks either. I have been anxious in the past, and I know what it feels like when I’m experiencing that. I’ve felt more positive than I have in a long time, I just don’t see that it’s anxiety.
If you have had Anxiety and depression in the past, this tends to be what they see.
However, You may have unresolved issues around the fears of certain health issues that others in your family experienced. You may fear certain symptoms because of it? It would be quite normal to have such concerns.
Fibro, as you know, can mimic all sorts of conditions. Kidney, heart, you name it. Mostly we don't have these problems.
I think what is hard to take is how we can feel fobbed off. That they don't hear us. It's just anxiety not 'Oh your loved one died this way and you are afraid and upset about it. That sounds pretty normal. And hard to live with. How about we explore those feelings?' We get to feel we are hypochondriacs if we say we are scared of being poorly, not we got stuck in that feeling because of the grief and fear that are stuck with it.
I think a lot of Fibros have difficulty feeling heard, understood etc. A lot of us are super sensitive in a nice positive way, yet too often this sensitivity is perceived as negative and weak, which we aren't at all.
A lot of things are not as they seem, yet we fibros are expected just to accept what is said.
Personally I would keep with your assessment that you are not anxious but maybe, like so many of us, you fear dying? You fear you aren't ready? You fear dying a particular way? And of course dying is inevitable and we wont get to choose. And it will be absolutely fine. When we go. Because it will be our time.
During lock down I've had time to look at myself. Meditate. Start examining what all this inner child stuff is about. Looking at how if we don't deal with our issues they accumulate around us like some kind of bad smell! They need examining.
The Corona virus has brought up the fear of death for lots of us. Are we ready? Have we done any of the things we came here to do? There is lots now on the You tube that can help with these issues. They aren't just 'Depression' 'Anxiety' they are human issues. Why was I born? What do I want to do or be, before I die? Is there a spirit inside you that wants more than a material ordinary life?
There is so much to learn about being human. Why we get hurt and stuck. Why we don't heal. Why we put up with doing jobs we hate and that don't do the planet or people, or even ourselves any good. It's not depression that we feel when this happens. It is unease. Or even Dis-ease. Folks are starting to wake up. Do we really need to destroy our planet to survive? That is a pretty weird concept that has been sold to us, isn't it?
And maybe that has been a lie? Most Fibros hate lies. They get bent out of shape over it. It goes against their inner guidance. Who they are.
How about learning meditation? Go to You tube or some free site that tells what to do. find a nice bit of music. And relax. Meditate. Find the you within. It will help any ' Anxiety' but better it will connect you to how you really feel.
You may decide after going within that you do need to look furthur. There are so many great teachers on Youtube who post useful stuff for free that can help us get unstuck. You just need to search. You know the questions you have. Ask Google. Ask you tube. You will know when the answers are right. You will feel it.
Not denying your physical symptoms, but while the Drs say you are fine, maybe have a look around yourself to see whats what? Happy hunting,
I’m a pretty deep person anyway. Up until about 2 weeks ago I meditated daily, did yoga several times a week and did other exercise.
My mom’s best friend died of Covid. But I’ve dealt with it really well. Yes you are right, i don’t want to go yet, i have so much to give and so much I still want to do (how does this sound like depression?).
I have embraced lockdown rather than fought it. I’m not saying it hasn’t been hard, but I’ve taken it as an opportunity to have the time to improve myself and get going on projects that I wouldn’t have had time for otherwise. I wanted to use this time to make my life better. It’s been an opportunity to build bridges and spend time with my daughter who is still at home. I have used this time wisely, and planned for a post lockdown future that I’m excited about. And then the pain came. Out of nowhere, and quite suddenly, and 1 aspirin helped when ibuprofen, butec pain patches and paracetamol didn’t.
I used to be a business coach, and I’m a trained life coach although I don’t do this professionally. I have for many years been big into self development and improvement. Im a writer, and have just been given a wonderful opportunity career wise to retrain in a literary field. I was honestly looking forward.
However the pain has been so intense that for 4 nights in a row I thought I was going to die, the artery above my right eye pulsed so much I couldn’t bear to read, let alone write, watch tv or meditate. I had paramedics out at my home on 3.30am on Monday because the chest pain was so intense that I did my bp, and found it was 188/114. 1 aspirin and I’m close to being back to pre chest pain.
Paramedics came out and took an ecg which said: sinus arrhythmia consistent with right ventricular delay.
That’s not anxiety in my book. There is another explanation for this. I just need to get to the bottom of whatever that may be.
Sounds like you are doing everything right. Did the Paramedics know you are a fibro?
Some medics seem to have a real downer on fibros. Coz we are such Fuss Pots always wanting attention!!!?? (Grrr!)
Some conditions do need more care taken to get to the diagnosis. Mainly rare ones. We do read stories about these poor people who have to keep going back many for help until the Medics get them figured.
Dr Google is variously completely unconcerned about your Trace findings or depending on other symptoms, you could dig deeper. Dr Google reckoned, if your Dr is unconcerned then you should not be either. Given Dr Google does like to make us panic, there could be some comfort in that?
Have you tried meditating and asking what these pains are?
In the absence of accessing competent medical aid, you could try a healing meditation?
I hear you, I really do. I was fobbed off over an accident that was in my head. (yes really!!) By the time the GP ordered MRI etc,( to prove I was bonkers and thus, finally shut me up, this said while rolling his exasperated eyes) To everyone's surprise, my injury, was clearly visible in the pictures, but was no longer treatable due to my waiting so long to seek help. Oopsie?
If you are really assertive and brave you could just go to A and E and tell them you need answers? If you do, you probably need to have googled thoroughly, so if you need to, you can tell them what needs checking.
Personally, despite being a Fibro and how Fibros are always annoying attention seeking people, (apparently?!!!) I hate attention, and I hate making a fuss. I would, despite my dreams, rather die quietly than go to Hospital and make a fuss.
And if you do go to hospital,probly don't mention your fibro until you absolutely have to? Honestly, I doubt there are many things worse than saying that.
But I would still hope you are fit as a fibro flea, and you got some crazy muscle or nerve pain that's gotten out of hand again. Relaxation, (and stretching) etc is really important.
And checking your glasses? Using the computer for research and writing. All those hours engrossed?. Gotta make sure those eyeballs are in tipperty top shape. Taking regular breaks. Walks out, so you are looking into the distance? (Eyes can cause hellish headaches etc) I bet you are trying to practice like crazy to be the great writer you want to be? Remember your posture. How it will affect your arms hands neck shoulders, head? Fibros don't like sitting still for long. Do you need a Dragon? Help with the typing? Sadly these days I find I cant do as much as I'd like. Sometimes almost nothing.
When I had my chest pains, down my arm, into my neck, the whole thing, It was Good ol, costocondritis. Took it's sweet time to settle.
Seriously, as you know, Fibro can mimic just about anything. Worse it can try to rob you of your dreams and opportunities. We got to be smart to out smart it. figure how we set off the pains and then work hard to get them to settle.
I found Brad and Bob on the you tube who were great for Bodywork. Fixing muscle issues.
Good luck with getting to the bottom of your problems.
Sounds like Giant Cell Arteritis (GCA) which can lead to blindness. 60 to 80 mgs Prednisone is the usual drug prescribed. Polymyalgia Rheumatica (PMR) sometimes accompanies. You should be treated right away.
I certainly wondered if it was. I have been checked out by my optician today who said all looks well. I’ll keep pushing, there are so many things it could be.
My real concern and horror was the family history really and this not being taken into account.
can the symptoms come and go? As my bp is starting to come down the pressure is starting to get easier and my head feels slightly less tender. Can symptoms for giant cell come and go?
I’m just wondering whether it still worth me going to hospital with the symptoms appearing to improve. I did mention this at the hospital but they didn’t even examine my head let alone investigate.
I’ve been back to the hospital and Gp’s several times. They have done an ESR test to query Giant Cell but it’s come back negative. My Gp sent me back in to hospital today so that they could do a scan and they have refused and sent me home. I’ve asked about the nice guidance and being treated with steroids for 48 hours to see if it makes a difference and they said no because of the consequences of steroids. I’m pulling my hair out and not sure what to do. Any advice would be appreciated.
In the web site I sent you for doctors it says the following:
A blood test can detect if there is inflammation in your body. This is the erythrocyte sedimentation rate (ESR) test or the C-reactive protein (CRP) test. If the blood test shows a high level of inflammation and you have the typical symptoms then giant cell arteritis (GCA) is likely. However, the blood test is not specific for GCA (it can also be high in other inflammatory disorders). Also, some people with GCA have a normal blood test.
To confirm the diagnosis a doctor may take a small part of the temporal artery (a biopsy) to look at under a microscope. If you have GCA a doctor can see the inflammation and abnormal giant cells in the sample of the blood vessel (artery) wall.
Did you show them those web sites? If so, they obviously didn't read. I would certainly go to another medical facility. There is a 2017 Mayo Clinic study that shows that prednisone does not cause all the problems associated with it. I will try to find for you to show your doctor.
Polymyalgia Rheumatica and Steroid Side Effects: New Findings
August 18, 2017
Except for cataracts, side effects in PMR patients treated with glucocorticoids and non-PMR patients were not statistically different, new research finds.
By Kathleen Doheny
Google the above or 2017 Mayo Clinic study and print it out to show your doctor.
Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org
While some of your symptoms may link to Fibromyalgia, we are not medically qualified to say whether your diagnosis is correct or not. Anxiety and stress can create physical symptoms and it can be difficult to determine the difference between them and fibromyalgia symptoms x
Hi there, sorry to hear the situation you are in and I truly hope your symptoms continue to easy and your anxiety dissipates too.
Chronic pain conditions can be so debilitating, please know you are not alone and you will definitely get support and warmth from the wonderful people on here as well as great advice.
I suffer chronic pain myself, with Hyper Mobility Syndrome which I have lived with for ever, but recently, 2018, I was also diagnosed with Fibromyalgia; I feel I had been living with Fibro. for quite some time before my diagnosis.
I couldn't say your symptoms sound categorically like Fibro. I would certainly ask your GP for a referral to a Rheumatologist to have your diagnosis confirmed and better explained.
I recently attended a "Pain Management Programme" and it has been the best thing NHS have been able to offer me. Over the years I have tried many pharmaceuticals, physiotherapy, along with nutritional advice, the later of which helped.
Unfortunately I don't hold much regard for my GP, although it has completely changed recently, so my faith could be restored. Throughout the years with my Hyper Mobility they were extremely dismissive, to the extent that I would have an annual referral to my Rheumatologist to discuss this condition.
I hope you get to the bottom of things sooner rather than later.
Thanks Fibroska. I’m concerned that my Gp hasn’t ruled out autoimmune disorders that could be targeting my organs, hence the chest pain and blood in urine that I’ve also been having for the last 6 months. Although the head pains are new, I would’ve thought it would have made sense to rule out temporal arteritis or an autoimmune disorder as I am displaying the symptoms for these before diagnosing me with fibromyalgia, especially because of the potential consequences, but alas this is not the case.
I honestly don’t feel like this is anxiety or panic attacks. My most stressful month this year was mid february. Being off work has allowed me to take care of myself and im certainly not feeling anywhere like I was in February. Until the arrhythmia was queried in late February (which by the way was the result of medication which I was told to stop immediately) my blood pressure did not vary very much and stayed pretty consistent. The variation in my bp has only been in the last 2 weeks.
I feel like my Gp has given up on me. They have tested for RA but that is it. He himself told me that they are only giving me this diagnosis because they can’t find anything else, but refused to budge when I asked why I hadn’t been checked for lupus, hashimotos and temporal arteritis. Temporal arteritis although rare in under 50’s is relatively easy to check for! My last ecg done by paramedics states I have an arrhythmia/right ventricular delay.
One of my liver function tests is also outside of range and is linked to nerve, muscle and bone pain. I feel like so much is being missed before concluding fibromyalgia.
It sounds as if you are in a similar situation as myself, that you can't change your GP.
I would contact your GP and explain that you really need to get to the bottom of things and you would appreciate a referral.
My main symptoms were body pain although the head has become more frequent these past years, but it was a Rheumatologist who diagnosed me while ruling out RA and Diabetes.
The symptoms you have described could be down to a flare up in your anxiety (chest pains etc), which would be understandable under recent circumstances; but i am in now way medically qualified to say one way or another.
I was diagnosed with an under active thyroid a few years before the Fibro. have you had this checked, sorry to be so intrusive, I am just trying to think of anything that you've maybe not considered. I can't remember if it was the liver which flagged this up for my GP, but it was you mentioning your liver which reminded me about my thyroid.
What ever you do, try not to self diagnose, I am a firm believer in letting the professionals diagnose, then we know what we are dealing with, when you know what you are dealing with you can learn to accept and live with.
I wish you all the luck in the world in getting on top of things.
Most importantly don't give yourself a hard time when you are unable to complete/do things, what you can not do today, you may be able to do tomorrow. Speak to the people around you, explain the pain and fatigue you are experiencing and that a little extra help would be much appreciated until you are feeling yourself again. Until feeling good, do what is personally required and little else, try and find something enjoyable to fill your time, watch a good movie, do some colouring in(I very recently reinvigorated my love for painting by numbers), play some less energetic games such as cards, dominoes or my personal favourite is on line Mahjong (you can stick your headphones in, listen to some fav. tunes and totally amerce yourself for a little while).
Unfortunately I asked for a referral yesterday and it was declined.
I am just so fed up of fighting this but will continue. I really don’t feel listened to.
Regarding thyroid, I have had thyroid/lupus type symptoms for years. My Gp has not tested me for these and is now refusing to do so as they have tested for RA and celiac. A few years ago I had extensive bleeding for several weeks, which the consultant said May have been inflammation but could not be sure as the results of the colonoscopy were poor. The bleeding subsided by itself but had been severe enough for a referral for cancer. Around this time I lost most of my eyebrows and had a rash across my face.
I have been told that my thyroid test results are consistent with hashimotos, but because my bloods are still within normal range my Gp is refusing further testing.
I’m exhausted by the constant challenging, but will keep going.
Is there another GP in your practice that you could see? Sometimes a fresh eye will catch something previously overlooked
GPs are under a great deal of pressure at the moment with all the Covid 19 precautions they must take, and Video and Telephone consultations are not infallible.
I know GPs are being urged to cut back on referrals and tests right now; GP surgeries now being businesses in their own right, instead of being funded directly by the NHS, now the great god Money is driving , rather than need.
If you cannot get to see another GP in your practice, is there another local practice you could change to? (there is only 1 GP surgery in my town).
I have tried all the GP’s in my practice now. I’m concerned about the family history they’re looking over and the fact that so much has yet to be ruled out, and the likelihood of me getting to the bottom of this reduces significantly if I simply accept the diagnosis.
Nice to talk to you. Firstly I am so sorry to hear about all you are going through.
Have you asked to be reffered to Rhymatologist and Neorologist?
I have been diagnosed with Fybromalgia through a Rhymatologist. I have developed an irregular heartbeat and can get very dizzy. I have IBS, gout and reoccurring eppiscleritis (spelt wrong) in my eyes, which needs steroid treatment.
I also get scalp tenderness etc...
However, you mention slightly raised levels following tests for autoimmune conditions one being RA. In this instance, I would tell, not ask, your GP that you want a second opinion via a Rhymatologist and Neorologist not another GP.
I hope this helps. Sending thoughts and a virtual ((hug)).
Hi and welcome not sure where in the world you are but if UK and you can get to London request referral to Guys and St Thomas’s Fibro clinic. One stop shop - you will be seen by various professionals from psychologists to rheumatologists and a personal plan will be discussed and forwarded to your GP. Can I suggest you put all requests for referrals in writing and then follow up with a telephone consult to discuss. All my verbal ones were ignored but in writing and having a meltdown during the phone consult I finally got the referral. They can’t ignore letters where they can deny requests made verbally. Worth a try. If they continue to ignore then either seek another GP or report them. Good luck
You are entitled to ask to be referred wherever you wish. The fibro clinic is only one appointment so it’s not as if it’s going to cost a fortune. I mentioned in my letter that my MP told me that! My GP actually said to me that the clinic couldn’t do anything she couldn’t do. Well as that was a big fat zero I was happy to take the chance😁
I have asked to be referred to both but told to just take the meds and try that first.
Yes, I have slightly raised tests for CRP, ESR.
Last bloods also showed Hyperlipidaemia, and Serum Sodium (kidney) being high. These have all been dismissed when I have asked about them because they are only slightly raised and none have been followed up.
Serum Calcium is also on the low side which would explain bone pain that I’d had earlier in the year - 2.22 (2.20-2.60) and Protein Serum also on the high side -75 (60-80).
Thanks GV19, that may be where I’ve been going wrong. Asking for referrals, not telling!
I have just been told by someone on the fibromyalgia forum that gps are discouraging referrals due to reduced nhs funding, so worst case scenario is that I will have to find a way to go privately.
Thanks. No, they didn’t know that i apparently have fibro, as this diagnosis was given over the phone and without a medical examination after paramedics had attended. This was a GP’s conclusion that they think I am and that I should try the meds and see if they work! I don’t want to take this from a Gp who seems to be ignoring test results that are coming back outside of range.
I’m afraid I’m not comforted by that no. I spoke to a woman on the BHF forum who was sent home with chest pains and was told they were everything from a digging bra strap to anxiety, and was sent home from a&e 3 times before finally being admitted. She explained when she was admitted she overheard the consultant say, why was this lady sent home with such a horrible ecg. Turned out she had a heart problem.
I worked for Pohwer a couple of years ago, who are well versed in supporting patients whose doctors have told them it’s nothing, only to find it was.
Just my opinion but I believe that just because your symptoms don’t fit the main criteria, doesn’t mean there isn’t something more rare going on, but that doesn’t mean everything is ok.
A rheumatologist needs to diagnose you with fibromyalgia, they do this usually with the tender point test, I don't know how a normal doctor has prescribed you with fibromyalgia over the phone.....read the following for info on the tender point test, then, if I were you I would ask the doctor what he has based his diagnosis on.
I’m more shocked than anything that not all tests for autoimmune disorders have been carried out. I have had bone pain, but it also coincides with a vitamin d deficiency.
I’m not saying that I absolutely don’t have it. I just don’t think I do based on all the research I’ve done. I’m just saying that I think my concerns have been dismissed, that not all potential causes have been ruled out first.
On the phone my Gp said “this is the diagnosis we give to people when we have ruled everything else out.” When I asked why they were giving me this diagnosis when they hadn’t ruled everything out ie Hashimoto’s, lupus, Sjogren’s, cardiac issues that don’t show up in bloods, he said “I think my dear your pains are related to how you’re feeling.” When I said I wasn’t feeling stressed and he said nothing other than take the medication.
They were testing until Monday, and have now assumed this diagnosis without seeing me, and although not all of the results appear to have come back, and knowing I am still waiting to be seen by cardiology after A&E wrote to my GP and advised that they thought I had an arrhythmia. The GP was told to stop medication I was on until my heart had been checked. They have also not acknowledged my TSH has been increasing rapidly over the last 18 months although it still just within normal range, but definitely outside of optimal or even median.
Prescribing further medication that can exacerbate an arrhythmia such as the pregabalin and Amitriptyline goes against the advice given to them by A&E as I’m still waiting to be seen by cardiology due to the lockdown. I’ve contacted cardiology and explained all of this and the hospital attendances, and they have agreed to see me on Tuesday, so fingers crossed.
Doctors are pretty useless when it comes to any neurological problems and they are certainly not qualified to diagnose them. There are so many people now being diagnosed with fibro who clearly do not have it, it has become a cop out diagnosis for mainstream doctors when they cant diagnose a medical problem that they can throw pills at.
I really hope you can get a proper diagnosis and treatment that works for you xx
Sounds like your being fobbed off to be honest, those aren’t necessarily symptoms of anxiety or depression.
If you have any more symptoms ring 111 or go to A&E and in the mean time put in a complaint to the practice manager at your GP surgery, and also look at moving GP surgeries.
Whether you have fibromyalgia, depression or anxiety or not you have physical symptoms that need to be checked and investigated fully.
Just because fibro mimics different conditions at times doesn’t mean your symptoms don’t need checking and help to bring down your blood pressure and pain.
Be logical write down all the symptoms you have and then any testing you have had that isn’t within normal testing boundaries, then the family history you have.
So you can give it to any medic you see. If you can do regular blood pressure readings at home and get those written down and a pain or symptom diary too as evidence.
Best wishes with pushing for your own treatment and advocacy.
If nothing else you should at least see a specialist for a correct fibromyalgia diagnosis and so any other autoimmune condition can be ruled out.
I’m sorry you have had poor treatment you deserve better and being told to relax and be mindful although is helpful for some it doesn’t get to the bottom of truly checking out your symptoms.
Thank you so much Floofsclairy, that’s wonderful advice.
I do feel like I’m being fobbed off. The fact that 1 aspirin in several days worked, or that my symptoms are correlating with a rapidly increasing TSH (I’ve got several results from the last 18 months so can see the trend), and that this alone can cause palpitations and all of the other symptoms I’ve been having is worrying. Not to mention the fact that my GP’s are already aware that I am waiting to be seen by cardiology. Why those results allowed to come in before diagnosing me when I have predominant left side chest pain, I’ll never know!
I’m fed up of telling people I don’t suffer from panic attacks. Or that I’m not feeling particularly stressed. I’ve been shielding, and have been lucky enough to get my groceries delivered every week, with access to a helper/volunteer if I needed. My daughter has also been shielding (we both have asthma) and besides the death of a family friend, we have dealt with lockdown fairly well. This is the least stressed I’ve been in the last 10 years.
I’ve had a business fold with all my savings inside, been dumped prior to walking down the aisle, lost both of my parents by the age of 31, and been a single parent most of my adult life. If there was any point in my life that I was going to have panic attacks, it was then! Yet, I didn’t. That’s not to say I didn’t and still don’t get anxious or stressed or depressed from time to time, but please show me someone who doesn’t when going through massive life changes.
I’m mindful already. Regularly meditate and do yoga, so being told I need to just look within is of no help, especially when there are other diagnoses that should be ruled out that could be potentially life threatening.
As you rightly and brilliantly articulated: even if I do have fibromyalgia (which at this point I obviously can’t rule out) that doesn’t mean these symptoms shouldn’t be investigated. It also doesn’t mean that someone diagnosed with fibromyalgia can’t have a heart attack or any other comorbid diagnosis.
I’ve started a diary with symptoms alongside bp readings, about a week ago so hopefully that should help. Fingers crossed!
I haven't had a diagnosis of fibro but I have had years of pain, tiredeness, palpitations, trembling, numb arms, feet etc etc, you name it I've had it. All for about 15 years. I got checked by a neurologist about 2 years ago for MS but don't have it. However my doctor has told me he can't refer me for fibromyalgia, he said anyway there's nothing anyone can do..so unhelpful...I really need to change surgeries but I live in a village! The reason I'm answering to your post is that last year I had terrible sharp pains in my right temple, as well as numbness in my face on that side, pain over the bridge of my nose and slightly blurry vision. The doctor gave me steroids and said that if it was temporal arteritis the steroids would stop the pain. As they didn't, he said that it wasn't that. Around the same time I woke up in the morning and couldn't open my jaw fully! It was so painful I couldn't chew properly for months. I eventually went to the dentist who said if it was a jaw problem she could refer me to a jaw specialist but it would take ages....all in all both problems subsided eventually but it took months. I tend to go to the doctor if something is acute to double check it's not life threatening, but most of the time I have no faith in the medical profession any more and just deal with it myself. I know that may not be much help but just to say that mine went away. I was almost convinced it might be shingles or something, or maybe I was tense and grinding my teeth without knowing in the night? I occasionally get those stabbing pains in my temples anyway, although that time it was different and much worse, but it seems to be ok now. I hope yours gets better. You could try a second opinion or change surgeries too, I think it's the luck of the draw with GPs, some seem to be very sympathetic but not mine. x
So sorry to hear your story Mullikins. Have you been tested for thyroid, pituitary or autoimmune disorders?
There’s also lots of evidence emerging that suggests fibromyalgia may (in many cases) be thyroid related. I have recently had some thyroid tests done privately because they keep coming back within normal range. Recently I have been found to have high cholesterol, high bp, and low vit d, which are all symptoms of hypothyroidism. Vit d deficiency also causes bone and muscle pain, aches and cramps.
I think it’s likely that my headaches are linked to high bp. After taking the aspirin my headaches and vision are now improving. The blurry vision is now gone, and my optician today confirmed my symptoms are consistent with high bp.
In the last 18 months, my TSH has gone up significantly and my latest results show that I am above the mean average and far away from optimal and therefore well on my way to hypothyroidism. I have also been told that my test results correlate with Hashimoto’s, however while my test results are in range, I would never be treated for this.
I’ll get more tests done and then write to my Gp requesting a referral. If this is declined I will look at changing surgery or going private.
My upset is that so many things have still yet to be ruled out.
can the symptoms come and go? As my bp is starting to come down the pressure is starting to get easier and my head feels slightly less tender. Can symptoms for giant cell come and go?
I’m just wondering whether it still worth me going to hospital with the symptoms appearing to improve. I did mention this at the hospital but they didn’t even examine my head let alone investigate.
I don't feel qualified to answer your question other than perhaps the asprin or other medication you may have taken alleviated the pain. The following websites were taken from the PATIENT forum I belong for PMR, which I have had for five years. They may be shown to your doctors in case they have no knowledge of GCA or PMR. I wish you well and hope you get the doctor and medication you need.
Thanks for that pegpowell. I have all of the symptoms (raised temporal artery, pressure in temples but worse on right side, tender scalp on right temple, stiff neck and visual disturbances).
My Gp clearly thought it was something else emergency like because he sent me for blood tests yesterday and they came back ok apparently. He said ESR and CRP not raised.
He sent me in as an emergency to a&e today, where they did some reflex tests and that was it. The ultrasound and ct scan my Gp said they would likely do was dismissed. They saw the blood results from yesterday that my Gp has done and said there was nothing wrong because the inflammatory markers weren’t raise.
Luckily, I had a webpage open on my phone with nice guidelines for GCA. I asked why other tests weren’t being done and I was told because the blood tests were fine. I directed the dr to the nice guidelines that states not all ESR and CRP results will be abnormal in GCA, and she went off and spoke to a consultant, and she returned saying that they would not do a biopsy or scans because there was no need. She said they weren’t classing me as an emergency which meant that there was nothing they could do for me.
I directed her again to nice guidelines again which state that in the absence of test results steroids should be tried. Once again she ran off to the consultant, and she returned to say that they would not try them because I have high blood pressure and I needed to get my blood pressure down first. My blood pressure was high today but not as high as it has been - I started blood pressure medication yesterday.
I was told to go home and take painkillers and that I must have a tension headache. Painkillers don’t help, I’ve been taken naproxen, cocodamol and ibuprofen and paracetamol and nothing works, because the pain isn’t a pain as such but a pressure. They didn’t consider that it could still be GCA or Intracranial Hypertension. I have had this now for at least 5 weeks consistently day in and day out. I feel really let down.
I called my Gp from the hospital and he was of the opinion that there clearly isn’t anything wrong if that’s what has happened today, and that he will send me for a ct scan. He said the blood test was fine and so didn’t think it was GCA and likely a migraine but would send me for the ct scan anyway. Which I’m not even sure I need. That’s the only hospital we have locally, and I don’t drive, so I’m not sure what to do next.
I am fine thank you my lovely for reaching out. I still get the headaches and visual disturbances but I am starting to wonder whether it’s hormone related instead. I’ll keep monitoring how I feel. Hopefully everything will be ok xx
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No one here is medically trained to give a diagnoses I'm afraid. But speaking from my own personal experience of suffering from anxiety and panic attacks my whole life and fibro for about 35yrs. I would say you sound like you suffer from anxiety. Which will make your BP sky rocket it does for me. It will also make everything you feel and to be honest things you may think your feeling a 100 times worse. That includes your Fibro symptoms I'm afraid. 
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Diagnosis as therapy?
Diagnosis 
Further diagnosis ... Why isn't it ever only just fibro 
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