Good afternoon
I’ve only just joined this afternoon after being directed to the website by a friend.
I have been experiencing symptoms over the last 6-8 weeks or so that don’t seem to be related to my other health conditions.
I was diagnosed with Fibromyalgia & Chronic Fatigue Syndrome in 2017. Since then I have had to give up work after what was diagnosed at the time as a chronic flare up of my condition. I have tried to go back to work part time but this only seemed to bring on the flare again.
Over the last 6-8 weeks I have been suffering with other symptoms such as urination issues at night, I’m having to get up more frequently at night, only to struggle to go. I have also begun to get uncontrollable tremors in my arms and upper legs. The pain in my hips and thighs has intensified and now wakes me constantly at night, also lower back pain. My balance is getting worse. I’ve had several falls at home and in the garden this year. My right hip gives way without warning. I’ve been x-rayed and had MRI but they cannot find anything wrong.
I have spoken with my go, but they just increase my meds and put it down to my fibromyalgia. I’m in the process of changing doctors in the hope I will be listened too. I had to fight for 2 years to be teased for fibromyalgia. I honestly don’t think I could wait another two years to get tested for MS. I just want to be listened to and taken seriously. I feel so low right now.
Hello sweetheart.
I feel so sad for you…not being listened too properly must be hell.
Many people with CFS report very similar symptoms to MS…The hip problem isnt typical, but muscle strength is in MS.
I hope your new doctor is better.
Take care.
Boudsx
Thank you for your reply. I’m just waiting for a new patient appointment.
keeping everything crossed x
Hi
l was diagnosed with fibromyalgia 9 years ago. Like you l feel all my symptoms are put down to this diagnosis and in fact l feel that progressively l am getting worse. I have been off sick for 5 months with vertigo amongst other things and trigeminal neuralgia . I can emphasise with you because the times l seek assistance from the GP is to get notes. In the past l have tried to explain my symptoms to be met with it’s the fibromyalgia, your vit D is low and that l might be depressed. As a result l don’t bother telling them!! Just because l look ok they don’t take me seriously. I have now decided to be more proactive.l am insisting on a neuro referral with a MS specialist and will pay privately. Life is passing me by and l have always felt my diagnosis was wrong.
please don’t be reluctant to see an expert about your bladder.
the bowel and bladder clinics are fabulous.
either ask your GP to refer you or you can self refer.
the nurses at these clinics are very kind and really don’t want you to feel embarassed.
being taught how to self catheterise has given me loads of relief.
(Struggle to get to the loo in the dark/middle of the night/finally get there and nothing comes but i know there is at least a pint)
so please seek help.
lots of our ms issues haven’t got much in the way of treatment.
I’ve just changed doctors. I’m waiting on a phone call consult and have written down everything I need to talk to them about. I feel I’ve been getting progressively worse. I’m now wondering if my episode I suffered almost two years again was actually a MS crisis and not fibromyalgia related.
Thank you for your encouragement x I feel a little better that I’m not just loosing the plot. I’ll keep you all updated on how my phone consult goes.
Hi confused23
l thought l would just let you know how l got on with my GP. My issues are slightly different than yours, in that although my bladder is irritable l am not getting your severe urinary symptoms. I do feel sorry for you. I too have had a fibromyalgia diagnosis. To get this 9 years ago l paid privately. He asked me questions, pressed on pressure points and then diagnosed me, a brief letter on treatment and that was it. Over the years my symptoms progressed to the point where l feel that l may have MS. ( since before Lockdown… vertigo, trigeminal neuralgia and pins and needles in left arm) I went to my GP determined to get something done as l have been stuck with the pandemic issues delaying treatment, l told her that because my symptoms are invisible, l have felt they were all dismissive of me. I was fed up of the an anxiety card being placed on me and that l may possibly be depressed!!l said we are all guilty of being judgmental within the NHS, l suppose l am fed up of not being heard. If l were that anxious l would be at the GP all the time yet for the last 5 months l haven’t bothered them at all, other than for notes believing the diagnosis of Labyrinthis and the response it would go away. In all my 9 years since diagnosis l have never bothered them unless it was to get notes, medication or have bloods taken. I had a really bad flare up 5 years ago and requested my Gp to take bloods, his response was these physical issues may be a result of mild depression and he would do the bloods but would guarantee they would come back fine. My vit D was exceptionally low at 10, he had egg on his face and l was offered an lV infusion but declined and ended up on oral treatment. I know this comment on my notes has resulted in me being labelled as an anxious patient yet l work in the NHS in a very stressful clinical setting and my colleagues tell me how calm l am in an emergency!
My GP is sending me for an MRI only because these symptoms warrant it. I asked to see a neurologist but she said if the MRI comes back ok l will need to wait for ENT. The wait at present is 30 weeks and l was referred 6 weeks ago, l have been unable to work since February and being off at this moment in time is not great for my colleagues and puts a unnnecessary stress upon me. l would be very interested to hear how your consultation goes as we share the same Fibro diagnosis and in all the 9 years l have had it, l am left to go it alone. No one tells you if the symptoms are normal and as much as we would never want an MS diagnosis, fibromyalgia is used too frequently as a diagnosis for something they don’t understand. So my point in detailing my experience is,no you are not going crazy and these symptoms are the result of something physically wrong with you. Their answer is always to offer you a tablet to feel as though they have helped yet in reality they often don’t understand what’s causing it. Don’t make my mistake over the years by not being proactive because you do not want to be labelled a hypochondriac, the symptoms may be Fibro but they need to rule out other things first. I do hope your neurologist is helpful. Keep us updated and prepare for it by making bullet points and questions. Begin chronologically with what led to your diagnosis and what symptoms you had and any flare ups. Make sure they have taken a renal and liver profile and full blood count recently and I had my thyroid checked too. The Neurologist will want to know this. Good Luck x
UPDATE
Been seen by go on Friday. She has taken bloods to check thyroid, diabetes, vitamin levels and full blood count as well as liver and kidney function. She is concerned about weakness on my LHS and that I had some drooping on the LHS which has since gone back to normal. She wants me to be seen my the stroke unit for an assessment. But tbh I feel it all related to my disc problem in my neck as that’s the same side. I’m waiting on seeing a neurosurgeon for that.
Will see what the bloods show.
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Good to know you`re having a full MOT.
Boudsx