Hi everyone,
Im new here and am new to forums generally so please let me know if i make any huge blunders
Ive been really really unwell for around 15+ years and im now just absolutely exhausted and wish it would go away.
I was diagnosed 20yrs ago with fibromyalgia and ME, and take a huge ammount of pain medications etc to manage that. Im not sure if it was a mis diagnosis or if this is completely seperate, but i have a lot of symptoms that just dont seem to fit with either of those, but due to the diagnosis most drs just pin me down as everything being fibro or that im hypervigilent and a bit neurotic. This has stopped me from seeing drs as much as i should and im now in a big flare up of something and dont know what to do.
I wonder if anyone has experience of similar and being fobbed off and being told sulymptoms are due to something else and what i should do?
Ive had 3 MRIās a few years ago which other than degenerative disk disease amd foraminal narrowing came back normal, no lesions or shadows on brain and discharged from neuro back to gp and pain clinic. Nothing explains my nystagmus, night blindness, spacticity and spasms, bladder and bowel issues cramps and pain in my ribs, and many othwr things.
Im just exhausted with taking opiate pain meds and Amitriptyline and being told im taking and doing all the right thingsā¦
The last 4 or 5 weeks ive been so unwell, ive got such severe pain behind my eyes and a cervicogenic head/neck ache and pins and needles etc i just cant relax and be comfortable at all, and i worry the drs will just say i have to deal with it and to get counselling for stress.
I wish I did have Wise words. It sounds awful what youāve been going through. The only suggestion that I could think of would be to ask to see a different GP, or to change to a different practice. Alternatively, if you can afford it, pay for a private consultation with a neurologist at your local hospital who specialises in ms. If you find yourself struggling the ms society help line really are fantastic.
Thank you, im with a huge practice but my records say fibro which all doctors in the country will read and generalise every pain i encounter as being due to mmy over sensitised cns. I was criticised by neurologist for writing a list of my symptoms and told me before hed even looked at jt that āwhenever hes lresented a list of symptoms, its usually due to anxiety and not relatable.ā He also told me that facial pins and needles, facial tremors and swallowing difficulties are nothing unusual and i shojldnt try and look for answers for everything. This really upset me eslecially after he wrote āhypervigilenceā in my report. This basically stated that im bonkers so my confidence in seeking help has really taken a battering. That was 2 years ago and ive been trying to manage and get on with it ever since. Do you think i should ignore what he said and see my gp or am i just batty ?
Of course it is entirely possible you are battyš many people with MS batty as well so I wouldnāt let that put you off! The important thing is that you donāt feel like everything youāre experiencing is normal, and nobody has been able to give you an explanation that settles your mind. If it was me Iād be tempted to put it all in writing, with the timeline of all of the symptoms and all of the impact those have had on you. I would avoid completely putting in any criticism of previous attempts to get an answer, but explain why you think it is important that somebody spends some time with you to understand the impact this is having on your life and to help you find a cause so that you can start getting some treatments for it.
What does your optician say regarding the pain behind your eyes, nystagmus and loss of night vision?
With regard to the swallowing issues, ask for a referral to a Speech & Language Specialist - they also handle the whole swallowing issue - I saw one relatively recently who confirmed that I do indeed have a swallowing issue which does not have a physical cause (ie. its neurological!).
The bladder issues - referral to Urology; that is what eventually led to my definite dx with MS.
I had 9 years of doctors and neuros telling me that I was imagining the symptoms I had, that it was just anxiety, just stress, just me being attention seeking, a woman of a certain age - Urology decided that my bladder issues were neurological and demanded a spinal MRI asap, which showed new lesions in my spine - and DX.
I feel like I have got a twin. Experiencing the same things and just get overwhelmed with all of it - especially the fight to get help.
I have had mriās - brain and spine came back with no evidence but my GP has decided to trial me on some MS medication to see if it helps.
Have seen a physiotherapist privately today and he is sending a report to my GP recommending an urgent referral to Neurology - already done four months ago and chased up but told another 12 months.
All of it does give you stress and there is nowhere to go for help. Everywhere has long waiting times. Please donāt give up - I havent got any wise words or feel like I have light at the end of the tunnel - but I do feel like I am approaching the tunnel with seeing the physio today.
Have you got access to a hydrotherapy centre near you. One has just opened near us and I had a first session - went really well with just walking for 45 minutes. Trying this every three weeks to begin with. It also did lift my mood being able to get out - I donāt drive and struggle socially as I am sure you do.
Keep pestering the doctors and chasing the NHS - if you donāt - you get left behind.
Take it easy if you can and I hope you find something that can work for you going forward.
