hi! Recently diagnosed but confess am feeling in a bit of a mess - my main symptom is horrendous muscle pain stiffness and spasm in my shoulders, lower back and hips. It doesn’t come and go it has been relentlessly progressive for the last 7 years, to the point I cannot walk more than 200 yards or stand for more than 5 mins because of the pain.
Does anyone else have this as I can’t find this as a symptom on the main FND sites.
thank you!
Hi
You are not alone. I also get these symtoms. Some of mine do come and go though. I might not have spasms for weeks or months or stiffness, then out of the blue I'll have a bout of them. As far as walking and standing go. I can't walk very far without pressure on my bladder and groin and lower back, also standing for long is very uncomfortable, but I do have spinal issues so that could be down to that. Maybe get your GP to test for vit d as I know that can cause stiffness and also maybe ask can you have an xray of your spine to see if you have any changes there? Hope this helps x
thank you so much for your reply - yes mine is absolutely relentless and continuous and getting worse. I haven’t been refereed for any help yet -I hope they don’t take too long
Hopefully when you get referred, they will send you for more test, or give you some medication to help ( fingers crossed ) Might be worth pushing for help with your GP.
Have you ever been seen by a Rheumatologist for PSA or RA and had a complete thyroid test panel done (TSH, FT3,FT4, T3 antibodies ? You do sound a lot like me a few years ago I couldn’t walk more then 10 steps and forget about standing… agh finally diagnosed with PSA which has been horrible.
Hi - thank you for replying, yes ALL of those things plus MRI of spine and head and legs. MRI shows increased signal in right leg, but not one of the 3 consultants I have seen about that have thought it note worthy. I'm so sorry you've had it tough... I hope you are doing better now... 
what do you mean by increased signal from MRI ?
My PSA was finally diagnosed by a Rheumatologist who deal with PSA and sadly this disease has destroyed my health Im starting to get better but I have to inject monthly and take 2 pill’s daily to feel a little human (Cosentyx and otezla)
This is the problem - I have no idea! That is literally is what written on the letter but no explanation given! Aaargh...
Hi:
I have been dealing with severe progressive stiffness for 5 years - spasms come and go. I am finally being referred to a rheumatologist - is this something your doctor might consider ? Please remember you are not alone. Stay positive - I know it is very difficult.
thank you for sharing, I have seen two rheumatologists (inc a top rheumatologist at kings college hospital in London) and they refereed me to neurology after several tests. All tests and scans inc brain and spine are normal. Only abnormality is in leg mri but no doctor has explained that to me!! I feel I have to accept the FND diagnosis and give it my best shot but if I continue to get worse I don’t know what to do. Good luck btw! This is tough!!
Hi GardenPlant - sorry may I ask if you have an FND diagnosis? And (obviously don't answer this if you don't want to!) how the progressive stiffness has/is affecting mobility?
Banjolinnhe
Yes I was diagnosed with FND about a year ago - a gait disorder. My mobility is bad have had many falls - I still try and walk daily even with pain and do my excercises. My gait is odd as it is almost like baby steps. Have had a few rounds of physio which has helped - had some incredible physios.
Thank you - my gait isn't so bad its intense pain in thighs, hips and calves that makes walking so hard. I try to e-bike for 20 mins twice a week and do 10mins yoga at home on the days I don't bike. Awaiting another - more specialist hopefully - physio referral following v recent FND diagnosis.
Banjolinnhe
I do have discomfort through the hip, thighs and lower back -the reason for the referral to rheumatologist is my joints ache - receive injections for the pain but then it just picks on a different joint. I also stationary cycle 1 hour daily six times a week and do 1 yoga class 1 hour long per week(do this as I do not sleep well and it helps me sleep).
it sounds like we are both trying! Rheumatology are confident it’s not my joints, it’s a muscle problem. Time might tell, maybe….
Yes we are both trying - that is all you can do. Do you use walking sticks? I use them and find they help take some of the pressure off my legs, hips and lower back. I wish you well in your journey.
I had Leki poles for a bit but the past year or so my shoulders have become just as painful as my hips / thighs so now use a scooter for longer trips. I use the bike around my village but that’s not a practical solution for bigger towns or days out! Onwards… all the very best to you too
Hello ,
When I was diagnosed with FND I was then diagnosed with fibromyalgia a year later.
Lots of the symptoms overlap and they basically seem to stem from brain signal..
My pain and stiffness I always put down to my fibro , the weakness and seizures to FND. Hope that helps x
That is interesting, and well explained! Thank you. Fibromyalgia has been mentioned several but GP reckoned the symptoms were too severe. Maybe combined with FND its a potent combo!
Your so welcome! It’s great to be able to support eachother on here.
My fibromyalgia sadly cost me my job back in August last year so I am now registered disabled so they can be very severe indeed.
oh I can so relate! I lost my (lovely!!) business September last year because of this and now use a mobility scooter for days out. It’s hard 🥺
Hi I do have the same symptoms and have had fnd for 10 years. The spasms are the worst and the stiffness especially when you stop moving all together is a nightmare if you want a chat just message me.
Hi Firstly, don't worry about matching any of the FND website descriptions of symptoms, I never have matched and still had FND for 14 yrs inc. done NHS Rehab for Motor FND.
Everyone presents their FND symptoms differently, that is why it is a condition so hard to understand and for the medical profession to diagnose - unlike set patterns of symptoms with other Neuro diseases such as MS or Parkinson's.
Secondly, not wishing to depress you, but I found when I had a muscle constantly in a state of tension the Physiotherapist could do nothing - something about not being able to work the opposite muscle to relieve the tensioned muscle, without stressing the tense muscle more?
Neurophysios work in a different way and act more occupational mindset i.e set goals and work on ways to achieve what you need daily, without fixating on actual repeated mundane strengthening exercises - so that might be an option for you, some can be found/referred through local hospitals.
I personally found Osteopaths to be helpful, by stretching and manipulating the muscles with some Dry Needling for good measure; it did release some tension in the errant muscles, albeit only temporarily. Sadly this service is not available on the NHS. I no longer go to an Osteopath, but have continued the stretching techniques learned from those few sessions and that really does reduce the pain for me.
Also, I got told that either Ice Packs or Heat Pads applied to the problem area are equally good - whatever works for the individual is fine.
Always think, pacing, posture and positivity with FND.
Look for the calm in the Storm!
that is SO HELPFUL thank you!
Yes I get muscle spasms in my left shoulder it goes right down my back and it's uncomfortable to sit, I also get lower back pain and in my hips,I get numb legs and pain from the top of my legs down to my ankles.I get involuntary movements,tics, cluster headaches poor concentration, memory loss, problems swallowing,body freezes when I try to walk, very poor balance I fall all over the place,insomnia and sensitive to noise
does anyone else get a pinprick rash that is slightly raised on their face, neck and chest?
spasms of windpipe
Neck Spasms.
Headaches and facial pain
Muscle spasticity and FND
