Fibro dx but feel there's more to it.

New diagnosis and before diagnosis
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Apologies if this post is in the wrong place, I’m new to this.

I was diagnosed five years ago with Fibromyalgia. My rheumatology consultant said I had clearly had it for many years, was absolutely adamant the diagnosis was correct and promptly discharged me into the care of OT. I didn’t have a problem with that and it actually came as quite a relief to finally have a diagnosis that ‘made sense’.

So I’ve struggled on and tried to concentrate on what I can do, with as much of a positive attitude as I can manage; but as time passes and my ‘flares’ get more severe, I have on several occasions asked my GP if there could be more to my condition. Whilst he has been very good with regard to my FMS, he has been pretty dismissive of any other symptoms over the last few years, choosing to use the old ‘well that’s to be expected with FMS’ or ‘oh I don’t know what that could be, but you have FMS so…’, but he hasn’t taken anything any further.

A while ago, I had to access my medical records for pension purposes and saw that my GP, who I actually felt was reasonably supportive, had made a comment in my notes that really upset me. I had asked him outright if my symptoms could be indicative of MS and had mentioned that my first cousin has it, mainly as I am familiar with her symptoms. He wrote . Firstly I don’t have a sister and secondly, though I know having an immediate family member may increase the chances of having it, I wouldn’t have classed a first cousin as immediate and was therefore not saying ‘I might have MS because she has’, which is what he seemed to be implying.

He dismissed my fears by telling me that there was ‘nothing’ on an MRI scan I had a couple of years earlier which was ordered due to severe migraine and basically brushed aside my concerns. Needless to say, I haven’t seen him very often at all since as I feel it is a waste of time.

My symptoms, in the meantime, have become much worse. I have had at least three episodes of hemi-plegic migraine (or that’s what he put it down to) when I lost a patch of vision in one eye and experienced numbness and weakness down one side. Was checked at the stroke clinic, but stroke was highly unlikely anyway as I have a clotting disorder similar to haemophillia (even though I’m female!). Have had a thorough eye check and nothing showed up, but they have changed my prescription three times and I still can’t wear the glasses I have. I have had every blood test possible, including Lupus and Lyme Disease. All were normal apart from my clotting - Factor X1 deficiency.

I suffer severe fatigue, so much so that I had to retire from my career in the NHS. I have weird sensations like water running down my legs or body, odd patches that feel like horrendous sunburn (no heat or redness on the skin at all) which occur out of the blue and a feeling like my legs don’t belong to me when walking, like a really heavy feeling. My feet and hands go numb. I regularly suffer from vertigo and separately, quite often stumble over my own feet. This is so depressing as I am only 48 years old. I can nod off mid sentence and if anyone interrupts what I’m saying I forget where I was. I can’t concentrate to read more than a few minutes any more. I am constantly frustrated by one thing or another, particularly when I can’t find the right word, or the wrong word comes out when I know what I want to say.

Reading back what I have written is so upsetting as I feel like a real hypochondriac, but these symptoms are REAL and I am miserable. My husband is coming to see my GP with me at the end of the month (the only available appointment) to demand a referral to Neurology. He wants me to go private, but I don’t see what paying will change, apart from the speed of the appointment.

Does anyone have any advice about how I can approach my GP on this? Though my husband is lovely and so supportive, he works on such a ‘logical’ basis (ie. you have a problem, so we will fix it). If this does turn out to be MS, nothing he can do will fix it.

I am not looking for a diagnosis here, just some advice from anyone who has experienced any of this. Am I going mad?

If you have read this far, thank you so much for making the effort…

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Gosh, that made interesting reading. Hubby has fibromyalgia, diagnosed 10 years ago. For him the worse things are fatigue and neuropathic pain. I can sympathise with you. I’m glad your husband is supporting you and going with you to gp. Question and answers always better with two of you. If it was me, I’d be asking for a referral to a neurologist and I’d pay privately too, just for the consultation. Why wait months for an appointment when you can speed things up a bit? Expect an mri referral probably, again, if you can afford to, have it done privately. Doing something constructive and positive will surely give you some peace of mind.

If it should turn out to be ms, no, your husband can fix it, but you’ll both know what you’re dealing with and knowledge is power. I wish you well and would be interested to know how you get on. I hope you’ll keep us posted.

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Thanks Poppy. You have just said exactly what I would tell anyone else

Fatigue and neuropathic pain are also a problem, but it is the unexplained stuff that really bothers me. I think fear of the unknown is a horrible thing.

I have given in to my husband and we are now looking into who I can see privately. We did that when my little girl needed major surgery and it really did speed things up.

Thanks again for replying. I do think writing things down and getting support from others who understand really makes a difference. I will update when I have anything to tell.

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Good to see this DD. Don’t see it as “giving in” to your husband! See it as giving yourself the best possible chance to getting the help you need. :slight_smile:

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Couldn’t sleep last night and found myself sitting at my desk at 4.00am going through copies of my medical records, only to realise that I have actually been having recurring symptoms since about 1987! I have suffered from migraine since I was a teenager, but reading back through the notes, I had loss of vision and pins and needles/tingling sensations several times over the years that had been put down to migraine. I had forgotten about these. I also note that the mri scan I had in 2007 was not only ordered because of severe migraine, but vertigo too. It was recorded as ‘normal’.

Perhaps I am just winding myself up by looking at back at these things, but I figure if I can point out anything that may be relevant, it might help in pinpointing what the heck is going on.

On a more amusing note, if having weird and unexplained sensations can be amusing, I almost made a complete idiot of myself yesterday. I frequently feel a ‘crawling’ sensation on my shoulder/back and quite often it makes me jump, thinking that there is actually something on my skin. Out and about yesterday and I feel the familiar niggle, quite a strong sensation on my shoulder. Now I have been trying my best not to let these things irritate me, so I tried to ignore it; until a lady standing next to me shrieked in my ear, elbowed her husband’s pasty out of his hand and ‘batted’ my back! Turned out it was a massive wasp! At least nobody got stung, apart from the poor bloke who had to buy himself another pasty! You really do have to laugh…

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It’s good to laugh DD, stops us going mad! :slight_smile:

Off topic a bit…but, hubby had a routine blood work a few weeks ago. It transpires he has Iron Overload in his system. This has not been picked up in the past as they are only ust including it in routine test here. He will be checked again in a few weeks to see if it’s dropped a bit, if not he will have to travel to Cork, (I’m in ROI) for tests to check if he has Hemachromatoisis. Googling this, all the his Fibro symptoms could relate to this. Now I can’t help wondering if, for the last ten years, despite all his FM meds, he has never had any relief from joint pain etc., could this be his problem and not Fibro at all?!

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Wow that is interesting! Haemochromatosis is a genetic disorder, does anyone else in his family suffer? I’m really surprised there haven’t been any red flag blood results in 10 years. I know it’s pretty rare and if there is no family history (it’s quite common in terms of being an inherited disorder) then I guess they wouldn’t generally look for it. I worked as a clinician for many years and phlebotomy was a large part of my job.

I would be inclined to look at his diet and cut out alcohol, anything fortified with iron like breakfast cereals, green leafy vegetables etc. and also avoid vitamin C as it helps the body to absorb iron. It might be worth it while he waits for his tests and keep a diary of symptoms to see if there is any improvement.

I hope he gets some answers soon. At least it is a condition that can be treated and any improvement in symptoms has to be a good thing.

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Thanks DD.

I too did lab work before I began my training as a Mortician. I understand the organs will repair themselves but, if it IS this, and not Fibro, his joints won’t get any better. We’ll just have to wait and see what transpires. He may well have both, Fibro AND Hemachromatoisis

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Well let’s hope that he has significant improvement whatever the outcome. Fingers crossed.

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Well that was a difficult consultation with my GP, who really wasn’t keen to refer me back to neurology. He did his usual ‘nod and look like he’s listening’, then reeled off several pills I could try, most of which I have already been previously prescribed, without even stopping to ask me any questions. I gave him reasons why I was unable to tolerate each medication in turn and he had to admit that he hadn’t checked what I’d had before.

Frustrated, I ended up in tears. Thank goodness my husband was there. I tried to calmly explain about all the symptoms I had experienced over the last 30 years or so, backed it up by pointing out that many of these had been quite dramatic and that I had reported many of them to him previously (even though he hadn’t seen fit to record many of them in my notes) and had seen neurology before on at least three occasions with various symptoms. My medical records show all of this.

He didn’t want to refer me again and asked if he could repeat all the blood tests again to see if there was anything flagged up. I agreed, though had blood tests two weeks ago so no idea what he thinks will have changed in that time.

I insisted on a referral to neurology and having been told that the wait for an appointment is 18 weeks, my husband insisted on a private referral once the blood test results come back. GP had to agree, though he then went to great trouble to tell me that an MRI could show lesions and changes even if I don’t have MS, so I am likely to just worry even more. Proof that he wasn’t listening. My last MRI was in 2007, any changes could at least be compared to that and I would trust the opinion of a neurologist over my GP any day to tell me all is ok. I need peace of mind or a specialist to tell me if there is any issue. I’ll deal with whatever else is thrown at me, if anything.

GP said he’ll ‘eat his hat’ if it turns out I have MS. Just hope I’m not providing the salt and pepper!

Thanks for reading x

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Just a quick update. All my blood tests came back normal - as I expected them to. My GP has finally, reluctantly referred me to neurology. With approximately an 18 week wait for an appointment, this is going to be a long haul…

In the last three weeks I’ve had two episodes where I lost feeling in my leg and arm and my sight was affected on the same side. On Sunday, I ended up on the kitchen floor after attempting to put some shopping away in the cupboard. I couldn’t get up.

The pain, pins and needles and strange sensations continue and I am thoroughly miserable. Tried to get another appointment with my GP, but after a telephone consultation he decided my symptoms weren’t severe enough to bother with.

He said that having an MRI would only worry me more as it would ‘probably show changes that are just down to age’. Well I would rather know if there is anything that is causing these horrible symptoms. I have tried to be positive, but when you have unexplained symptoms that are becoming more serious every time they occur, it starts to drag you down.

There have been big changes in our local area with surgeries merging into one big healthcare group. It is extremely difficult to get an appointment with a doctor, so trying to see a different doctor while I wait for my neurology appointment is nigh on impossible.

I’m sorry for the moan. Has anyone else been in this position? What did you do? I’m not sure where to turn next

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Ah well, somebody must have read my mind. Appointment with neurologist on 7th Dec. Only a 14 week wait from referral then…

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hi DD10

i can’t believe that the difference in waiting time between NHS and private consultations with a neuro is only 4 weeks.

14 for the private neuro and 18 for the NHS.

i’d be climbing the walls!

will you still go private?

good luck

carole x

and ps i snorted with laughter when you told about that wasp.

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Hi Carole,

Glad that gave you a giggle

The appointment is with NHS. I wanted to see how long it actually took to get an appointment before making a decision to go private. I thought my GP was trying to put me off as he wasn’t keen to refer me in the first place. He puts every single issue under the umbrella of Fibromyalgia. Quite patronising in my honest opinion.

There is only one neurologist I can see privately locally and he charges £250 for a half hour consultation. I need to try to get some answers though, so it looks like I’ll have to pay. I think I’ll go mad if I have to wait until nearly Christmas!

Thanks for the luck

DD x

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Hi DD

Do you mind me asking what area you’re in?

betty

x

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Hi Betty,

I have sent you a message.

DD x

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HI, I had a symptom in 1981 my left arm was dead everytime i woke up, the GP at the time told me that i needed to stop smoking i smoked 5 a day. This went on for weeks.

Over the years i had very weird things happen to me was even nearly diagnosed with Brucellosis because i was in Kenya and drank unpasturised milk.

Anyway lots of things. On holiday in brazil went blind.

Why am i answering you, oh yes, Lymes. The test in the UK are basically a waste of time, unless you have just been bitten. Once Lymes turns into a cyst inside your body you need specialist testing to find them. I had bloods sent to USA and found i had met lymes and had a co infection of it. Thats the first thing.

Eye issues, you need a VEP test. I had one finally in 2006 which proved i had suffered with Optical Neuritis at some point, the neuro thinks in 2000 and 2004 when i had a weird relapse for six months.

Then lots of MRI over time showed 3 different lesions, and LP, showed o bands but also inflammation in blood. I never got the diagnosis, i was always that one puzzle piece missing.

Finally in november 2015 i had another VEP test. It took until February to get a letter as the neuro had been off. They found active VEP for slowing down brain again in my left eye, and finally i was diagnosed with MS. Ten long years of going slowly insane, and now its PPMS.

The thing is you have to fight. You go private as you get seen and dealt with far more respectively. I have seen the same neuro for 10 years, and he was so happy to finally give me the diagnosis. He was always on the side of MS but protocal would not allow him to give me the diagnosis.

So go private.

Fibromyalgia is so over diagnosed now. Its all over pain, stiffness, muscle ache, tender points, but it seems now it can be anything the doctors want it to be sadly. There is a blood test-- called FM/a which i think anywith with the diagnoses should have to make sure they do have it.

Your symptoms do sound nuero like. But M.E. is very similar to MS and is actually now classed as a nuerolgoical disorder.

I have a friend with fibro and she couldnt get out of bed because of the muscle pain in her arms and legs both sides. She is in recovery now as doing swimming and walking and yes her bloods were positive for fibro.

She never had neuro issues. One of the main issues too is sleeplessness, and intolerance to pain.

So dont give up, go private. Only concentrate on the main issues that bother you. If you go in with loads of things it puts neuros off.

I actually did a diagram of my pain, it was all left sided, and the neuro loved it, and actually said he wished more people did that as he could see straight away what the issues were. My left foot has never changed, my left side is always weak but getting worse and worse now. I try to keep my right side strong to support my left.

Anyway you know how you feel. Remember though Lymes test are a waste of time if you have chronic lymes. I know with mine if i take certain antibiotics for things, it will kick my lymes awake and then boy do i feel rotten.

Keep the faith, every bit of money i spent privately was worth it. My issues was my age too. x

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Thank you for that insight. It is always good to hear of how other people have felt/been treated.

I was not aware of a blood test for Fibromyalgia. I’m assuming this is something only available abroad, as I have been a clinician for many years with phlebotomy being a large part of my work.

As for Lyme Disease, I have been tested. In fact I have had every blood test imaginable; all come back clear every time.

I always expected that getting answers was going to take a long time. Most GPs really have no idea how unexplained symptoms can affect a person. Sadly my experience is not uncommon and having worked in GP surgery settings, I am well aware of how most patients who present with such symptoms can be viewed.

Still, onwards and upwards. Thanks again for your response and all the best x

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Yes in the states they use the blood test.

I had 2 lymes test done in UK both were negative, until i had blood tests sent to the states. The point being too the lab i had my blood tests done also checked for epstein barr and although I had it at some point it was still showing at 95 (even though not active), and should have only been around 5 (not sure about the terminologies cant remember), so the EBV was screwing up the tests for my lymes and was also the reason why my LP showed inflammation in the blood tests which made the LP NEG for MS.

This is a great site it explains about negative results etc for lymes.

http://www.lymediseaseaction.org.uk/about-lyme/tests/

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DD10 your story reads a lot like mine, I was diagnosed with a vasculitis and FM aas there were no lesions showing on MRI. Like you I accepted the diagnosis but kept having massive relapses. I paid privately for a Neuro to look at my case with a fresh pair of eyes and then a month later went into a massive flare so I bit my lip (thinking about the bil)l and went to see him whilst incontinent in full flare his private secretary understood I felt really ill and slotted me in.

At last I felt believed, he quickly noted all the misdirections in my notes and referred me back to NHS brain, cspine and thoracic MRIs and got me in as an emergency. If I had to live on beans on toast for a few weeks I think it has been worth the money, unfortunately sometimes you have to fight (i’m sorry but advocate doesn’t substantiate the battle some of have). My MRI results will be back in a week so I will let you know.

let us know how you get on

Gilly

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