has anyone been diagnosed with fibromyalgia and later on found out that they actually have multiple sclerosis. Awaiting mri results just want to know how common this is?
fibro or ms?: has anyone been diagnosed... - Fibromyalgia Acti...
fibro or ms?
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Tink0812
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Hi there, from what I have read from a lot of our members its mostly the other way round. GPs tend to think MS because symptoms are similar to fibro. But on getting tested the GP comes back with a fibro diagnoses. Thats why they have to rule out MS first x
Momo
Hi For me it’s seems to be the other way round. I already have the diagnosis of fibro but he is suspecting ms and has sent me for a whole spine mri. Such a nervous wait for results
Fingers crossed all comes back ok. I will keep you in my thoughts xx
Please can I ask what’s the reason he think ms? What are you suffering with that’s different to fibro? I’ve not had an official diagnosis but I’m being treated for fibro so I’m really interested in others Journeys. If you don’t mind me asking xx
Hi I have all the usual fibro symptoms, but I think as I also have visual changes, numbness, muscle weakness, bladder issues , also I already have an auto immune disease (Graves’ disease) which leaves you more susceptible or likely to have another.( don’t quote me on that I’m not a professional) but I think those might be the main reasons why he suspects it possibly could be xx
Thank you. I hope you get the right treatment so you can function more comfortable.
I’m really scared at the moment I can barley stand on my feet due to the weakness in my legs and when I walk or walk up the stairs from hip to toe is spasms or cramps. I can’t bare it I’m 36 and I don’t think i can get about without a stick right now can you relate to this or if anyone is reading can you it’s getting me down xxxx
Yes I can stairs is also an issue for me as is walking it’s painful, I’m also quite young I’m 33 and I’m still learning to accept the fibro diagnosis let alone anything else! My gp has put me on amytriptyline since the fibro diagnoses which helps me with sleep but not much with pain. She keeps raising the dose rather than trying a new med for pain which is frustrating me at the moment. As I feel like a zombie/mentally numb in the morning and have kids to look after.I am also on here looking for advice and support as I know both fibro and ms can be quite lonely diseases when no one understands.
Im also fairly new to all this, had symptoms for years but diagnosed early this year.
Feel free to message if you need to talk sometimes it can help with people that can relate xx
Sorry that you are also going through this at a young age and with children to look after. I have 4 boys under 9 and have had no choice but to just carry on. I managed to get tramadol and naproxen and was on amitriptyline at night but recently changed to nortriptyline because I was like a zombie all day with amitriptyline at night ( I was on 60mg because the pain was unbearable at night and couldn’t sleep ). My boys are only little but they do understand when I’m in pain and that I can’t always do things with them. I feel like a failure and get so down, I’m a mentally strong person but this fibro has pushed me to a limit. Hope today is a better day for you xx
Yes as mother’s we have no choice but to just carry on as best as we can. Your not a failure if anything the opposite. As you still raising taking care of your kids through all that pain and discomfort, you should be proud of yourself ❤️
Morning, I am 37 and diagnosed with fibro this year after a long 2 years of pain. I had to buy a stick about 6 months ago as my hips and thighs are so painful and weakness in my thighs it is horrendous at times and uncomfortable on a daily basis. Hope you get a more comfortable day soon, take care. Busymumma xxx
Yes I have this in bouts...first time was so scary thought I would be in a wheelchair unable to stand or walk a few steps used two crutches and still in pain even unable to put nice shoes on or brush my own hair pain everywhere... I too had an MRI scan and it was confirmed I have spinal stenosis... probably from my arthritis and my fibro makes the pain more unbearable debilitating as the nerves stop working and my legs are weaker and numb... I did have a private physiotherapist see me and she gave me some gentle stretching exercises for my spine mobility and the pain has lessened also I was prescribed some higher strength antihistamines 180mg fexofenadine for a bout of bad hives which coincidentally eased my ,,semi'paralysised legs .... Not sure why but as it helps with my arthritis all over and my allergic bouts of skin rashes the GP allows me this on prescription and I take one daily... I do the spine stretching and take a magnesium complex supplement... Fingers crossed but my second bout of this debilitating all over body cramping and pain spasms was less severe and shorter than the last.... I also had a test for Behcets as I have severe multiple and frequent mouth ulcers and I do have HLA-B51 not sure how significant as I was invited to London Behcets clinic for further tests but I cannot face travelling there as even on a good day something like that travel and away day etc will trigger a flare or bout of the major horrible 'stenosis' I hope your MRI assists with your treatment and you don't have MS. Just a little tip..... remember to take your face mask off before you get put in the MRI tunnel as I left mine on and it was horrible
Yes it is horrible. As well as scanning my spine they also done pelvis to check sacroiliac joints as he also mentioned something called spondyloarthritis. I found the mri really difficult and I didn’t have a mask on, my hands went numb during the scan and I could feel the wire of the panic button slipping down my arm but couldn’t tell if I was gripping or not. It was traumatising for me 😖 kept my eyes shut the whole time which helped a bit. Hopefully I don’t have to have another
There are open MRI scanners for people with claustrophobia. I don't know if any NHS hospitals have them. Some private hospitals/companies have them and some accept NHS referrals so it's worth investigating in you area xx
Yes they did mention that when I went for scan, but I got that appointment quite quickly and was adamant not to waste it as I might not be that lucky if I had to re book. In future definitely something I would look into if another one is needed. Xx
I often think how can I be so ill with something with no treatment, I'm like you muscle weaknesses and pain from the waist down bladder and Bowel problems I use a wheelchair to get around and so Fatigued have been diagnosed with ME/CFS and Fibromyalgia..
Oh gosh, is this something that could be picked up by your optician?
They diagnosed me with Fibromyalgia after years of misery. I insisted I have other conditions too, so now it’s been confirmed I have Sella Syndrome
I also have Degenerative Disk Disease and severe spinal problem, I had major surgery too. I have Vertigo, and a year ago suffered head injury
I believe a combination of the above pushed me towards MS as I get seizures and attacks by my own brain and the pain is something else. Then my brain goes numb….
So I am now scheduled to speak to a neurosurgeon.
Apart from that I discovered I can be autistic and my GP has referred me for an assessment
I don’t want to bore you but I have many more illnesses, oh I forgot I have Long Covid too. 🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️
It can be hard to get answers when there are so many different symptoms I’m also in this boat. I was referred to physio for my fibro but the Msk consultant there has been much more thorough and it seems more willing to put all the pieces together. He’s sent me for bloods and X-rays also as signs of arthritis in fingers and feet, to figure out what is really going on. If anything shows on the mri he will then refer me to the relevant department. I get all my results soon over a telephone appointment(not sure whether this is a good or bad thing😖)
I have been dealing with my symptoms for years and before this year gps had me going round in circles.
Don’t worry we’ll get there eventually lol
Hello, I have a friend who was diagnosed with MS after initially being diagnosed with fibro. She was diagnosed after an MRI brain scan showed lesions and she also had a lumber puncture, which confirmed it. She had been diagnosed with fibro 9 years before the MS diagnosis x
Hi if you don’t mind me asking, what changed with her symptoms why they decided to check fo ms? X
She had been suffering from worse weakness in her legs and had had a few falls because of it. She went to see a neurologist who did their normal tests and sent her for a brain scan x
Thankyou, I had a whole spine scan and a bit annoyed and worried that if they do see something I’ll have to do the scan again to see brain, I really struggled with it. Hope your friend is doing ok and not too bad xx
I'm surprised they didn't add a brain scan too, especially for neurological symptoms. I was under the impression they wouldn't diagnose MS without one, but I could be wrong.She's doing well at the moment thanks, she's one strong lady!
Hope your results come through soon x
When I was first diagnosed with FM 20 years ago, I asked the GP if she was sure it wasn't MS (I was in a high risk profession for MS and already knew a colleague with MS). Her answer? "Oh no, it can't be MS. MS is not painful". !
That shows how much GPs knew about MS back then.
Luckily, after 20 years of no progression, I can confirm that it isn't MS (by living through it, and being a bit better, not worse after 20 years)
At least your GP is trying to rule it out. Hope you get a good result from your MRI, Tink.
Fingers crossed for you.
Thankyou so much x
I’m waiting for an appointment with neurologist because I was diagnosed with CFS and fibromyalgia 10 years ago but I have gotten a lot worse and GP thinks it might be MS. I saw a neurologist 5 years ago and had an MRI son brain and spine and he said it wasn’t MS as there were no lesions. I don’t know what to think but I am feeling dreadful
I know it’s so hard when there are so many symptoms and you may not agree with your diagnosis. I was referred to physio after my fibro diagnosis and the msk consultant there has been so much more thorough and attentive he has made all these referrals for scans etc, I don’t have long to wait as results came back quite quickly, still feels like the longest way ever though lol x
Hi , I was told last year I had fibo after repeatly going to my GP with pain , then February this year I had a mri scan that showed changes in the Brian, I was then told by a nurolgist that I either have had a stroke or MS ? I wasnt happy that a trained doctor said one of 2 things to me , because I was asking questions and wouldn't give up he then said OK it's a stroke because you don't have a family history of MS , hold on he didn't ask me that ? ...I informed him that MS is very much in my family IE 3 aunties 2 cousins. I'm now being treated for a stroke so I have went private using my savings in the hope I actually get a proper diagnosis. Sorry for the rant lol
That’s ok rant away lol I wouldn’t be happy with that either, the word possibly can be a scary word especially if you feel they aren’t investigating thoroughly. Please keep us updated. I’m hoping my results are straight forward either way as years of uncertainty are getting to me now x
Did you get diagnosed with MS in the end.
Family history isn’t necessarily a marker for MS, my daughter is only the second person in our large extended family with it and it looks like a bad case of glandular fever during puberty was the trigger. There are however several of us with fibromyalgia and other arthritic complaints.
That’s really interesting I knew fibro could be triggered by other illnesses, I didn’t know MS could be triggered that way. Thanks for sharing
It still under research but there seems to be a connection specifically to those who get it during puberty. My daughter had an old lesion on her frontal lobe and the neurologist thought that related to her very first ms episode around 16 when she had visual problems, she played flute in an orchestra and wasn’t able to read the music. Eye department in hospital couldn’t find anything wrong and things seemed to rectify. Except that with hindsight I realise this was also when she suddenly struggled at school with maths (she was an a* student) and I wonder if she was also unable to read the numbers etc I put it down to her being a teenager.
Fibromyalgia diagnosis can often be diagnosed in addition to an autoimmune disease. In my family alone, 3 with Fibro and autoimmune. Some had autoimmune diagnosis first others Fibro first. I know some other sites I am on this is the case for many people, some with 2,3,4 or even 5 different autoimmunities.
Tink0812 in reply to
Yes I am now learning it does seem to be common. My fibro has been diagnosed first but I also already have an auto immune previously diagnosed years ago
Hi I was diagnosed with fibromyalgia in 2017 but I’m currently waiting for results from an 2nd MRI, which they’ve requested after finding something on my first scan. My dad has MS so I’m really worried at the minute.
Hi yes the waiting is nerve wracking. I’ve been quite lucky I think as my referral went through quite quickly I had the scan in 2 weeks and the result were ready in a week so get them next week. Still feels like the longest wait ever. I am also worried but in a way the uncertainty gets to me more so really hoping for some straight forward answers. Fingers crossed for you xx
My GP referred me to neurologist end of April. Got an acknowledgment letter two weeks ago but still waiting for an appointment. Last time I went privately and it was £250 for each consultation plus the MRI scan and blood tests so now I’m not working I will just have to wait for an NHS appointment.
Yes I think I have been lucky this time with waiting times, previously I havnt. I’m hoping the luck continues. Are you being referred to neurology as they now suspect MS again or do they think it’s something else?
I pushed for the referral but GP agreed that I need investigating more. I’ve been getting cold feeling on my legs as though my jeans are wet and also shivers down my spine. These were new symptoms for me so I think something is wrong
I first went to my GP in December, got my first MRI in June took 5 days for the report. My GP rang me saying there was a significant finding and they wanted another MRI urgently so I only waited 2 weeks for the second one. Now just waiting for the results.
That must have scared you. It might be something and nothing. My last brain MRI 5 years ago showed a small cyst which had grown from the previous MRI a year before. The neurologist wasn’t concerned but said it was probably as a result of a TIA. He put me on blood pressure medication and aspirin. There was no follow up appointment either
They said it’s shown in my neck area so they just rescanned the spine. Hopefully they’ll phone on Monday. It’s the waiting that’s the worst!
The waiting is terrible because we all imagine the worst. Are you on NHS or private. I’m seriously considering paying yet again. I could see a neurologist privately in September whereas I still haven’t got an appointment with NHS. Apparently there’s a 19 week wait when you get an appointment until yo are seen. May use my savings. I’m so fed up feeling ill. Just had to cancel a holiday in Kefalonia which we booked in January when I felt ok.
Hi Patdoyle, I was diagnosed with Fibromyalgia in November 2021. I always get a feeling on my arms and legs as though water has been splashed on them aswell as getting shivers down my back up to my neck and when I am relaxed my arms and legs have spasms. I am 27 also suffering with anxiety, ptsd and depression.
You sound a lot like me. Did your doctor comment about the shivers down your back
The doctor hasn't said anything about the shivers. I sweat ALOTTTT aswell which is ever so embarassing and annoying. I'm either really hot or really cold what has your doctor said
My GP didn’t comment when I told her about the shivers. I also get really hot. Like you I’m either very hot or bloody freezing. It’s like my thermostat has gone!
It's absolutely awful isn't it! I have droplets of sweat that trickle down my face and neck and I sweat through my clothes during the night aswell.
Yes I wake up lots during the night boiling hot and very damp even in winter. Lots of people with fibromyalgia have similar problems so I’ve read on various forums. I don’t know anyone else with fibromyalgia so I’ve found more stuff out by chatting on here. The doctor has only ever given me advice on treating the symptoms which a lot is common sense. I only now sleep with a sheet over me and fold the duvet at the bottom of the bed but very rarely need to pull it up over me. However my feet get really cold and my nose would you believe
I'm the same. I have woken in the night and had to have a quick shower at times because my clothes have been wet through and the bed sheet has been soaking. I sleep with the fan on all night and the window open too. I was prescribed an under arm spray to use after the shower which hasnt made a difference. Having a bath makes me sweat and after a shower i find it very difficult to get dry because as soon as i get out, I am constantly sweating again. My feet are freezing cold most of the time too
Try to keep as calm as you can with the thought of what the MRI is being used to test for.
I was diagnosed with Fibro first but because I also had a number of neurological symptoms different to those expected for Fibro , and more in common with MS , I was also sent for the MRI.
As my Rheumy said , this was to be absolutely sure and , for him, it was a way to rule out MS as a possible cause for the symptoms rather than that he expected it was MS.
I do not have MS. I have chronic Dysautonomia which added to the neuro symptoms , many people with Fibro can have the most common version of Dysautonomia called P.O.T.S and it can give symptoms similar to MS when unmanaged including palpitations , tremors , numbness and muscle weakness .
I also have suspected MCAS which , again, us a likely cause to more of the tremors and hypersensitivity reactions of my nerves.
My neuro symptoms were getting far worse recently and I just assumed it was my Dysautonomia needing more management. During the routine blood tests I have to check if my medication has effected anything they finally found a change in blood that led them to check my Vitamin B 12 level and iron.
It turns out that I have Vitamin B12 Deficiency Anaemia, and this can , as it had with me , cause increased neurological symptoms similar to those of MS and Parkinson's . They are now checking that it isn't Pernicious Anaemia.
I am just starting the loading dose of Vitamin B12 injections and the neuro symptoms have reduced somewhat already.
Could I ask , have you had your Vitamin B12 , Iron , Folates and Vitamin D tested recently?
Had they done a kidney function blood test?
If not , it might be a good plan to tell your GP that you would like to have these checks done to make sure you have no deficiency that will add to your neurological symptoms, no matter whether you are diagnosed with MS , or you have Fibro alone.
It's worth doing no matter what your MRI results show.
Low vitamin and vitamin deficiencies can have a huge impact on the symptoms of Fibro and other Chronic illnesses. Vitamin issues are more common with a Chronic condition too because we use more of our vitamin reserves dealing with our illness and can also absorb less of the nutrients in our food and supplements than healthy people, especially if we have gastric symptoms like IBS or gastric reflux as well .
Good luck with the MRI , keep your eyes closed , have them play the music , and just relax yourself with slow , deliberate breathing and it is done in no time and it isn't as bad as you would imagine. Take care , Bee
Hi, thankyou Bee. I have had the scan I get the results on Monday so not too long to wait.Over the years I have consistently had low vitamin D, and what usually happens is they put me on a really high dose and then tell me to reduce it after a month. By the time I get bloods done again it’s usually low again. I take supplements everyday it just doesn’t seem to stick.
The others you mentioned are all fine.
Maybe that’s another thing that needs investigating further.
Thankyou for your well wishes x
Hi Tink0812... I have been diagnosed with fibromyalgia years ago, I also have autoimmune hassimotos, and all the symptoms you described. I am also waiting to see a neurologist, and waiting tests. I have now also developed a problem with my swallow, waiting for another scan. Ms has been mentioned. Just waiting for more tests, and neuro appointment sometime in August. All the best with your test results.
I was diagnosed with fibromyalgia in 2019 - after six months of excruciating pain in my spine, being confined to a wheelchair, and pleading for tests/scans - any tests/scans.
It turned out it wasn't fibro, after all.
It was terminal cancer, finally diagnosed after an emergency MRI granted by a musculoskeletal specialist.
The tumours had spread everywhere (bones and bone marrow): throughout my spine and pelvis, my sternum and clavicle and the base of my skull.
Ultimately, it also spread to my brain.
My GP and my Oncology team had chosen NOT to take my history of two previous (primary) cancer diagnoses in 2016 and 2017, respectively, into account.
And they'd also blithely told me, "You've not been ill long enough for us to give you a scan".
True story.
One I relive every day.
Really sorry to hear that. We constantly say with new symptoms to go to the go. But it does not help of the GPS do not do their part.
I am so sorry to hear that. My gp also would not refer me for mri, but like in your case the musculoskeletal consultant has, as the most severe pain I get is always in my back and neck amongst other symptoms. It’s so sad that these days it really is pot luck whether you get a gp that spends time trying to put the pieces together, or just stops at the first diagnosis that comes to mind.
OMG. So sorry to hear that!
Hi, two years after my fibro diagnosis I’m currently looking at a possible MS diagnosis too. Increasingly painful headaches meant a trip to the optician who flagged up a possible inflamed optic nerve (an early MS symptom) I was then referred to ophthalmology. I had several tests with them and they referred me for an MRI.
The MRI flagged up further issues and they’ve referred me to neurology and another MRI next month. It feels like a slow process but just trying to ride it out and hopefully get some answers.
Sending you lots of love & strength.
Thankyou so much, sending back to you also, and hope you get some answers soon x
I have many very similar symptoms to MS amongst a range of other symptoms that don't match. I went to see a neurologist who ordered a brain mri scan and reviewed my previous mri images of my spine. I have no lesions on any of the images so not MS. Sticking with the fibro diagnosis but at least I can now stop worrying about MS.
Wishing you all the best
Yes once it’s mentioned it is a horrible waiting game, happy for you that you don’t have it I’m wishing you all the best too x
Sorry to jump on the bandwagon late,. I've suffered with fibro for 15 years so yes I can feel your pain. I've tried many medications throughout the years and am now on slow release morphine and oramorph. I feel for you guys with young kids,. I've two grandchildren and I'm exhausted beyond belief after having them for a day (they are 6 and 3), but I can at least hand them back.
If anyone ever feels like they need to chat or advice or just to rant I'm always around
Be kind to yourselves
G xx
That’s so kind of you Thankyou, I find talking on here with people who understand so helpful, as I rarely talk about it to anyone else because they don’t really understand
It's very difficult ,. Seven years ago my marriage broke down partly because of my illnesses , but on a positive note I've met someone who never ever judges me or puts me down if I can't do something. So I'm thankful for that,. We may be warriors but we do need support. 🤗
Did you get your result. Hope all fine
No I got my days muddled 26th is tomorrow not today, so will know by tomorrow late afternoon. I blame brain fog lol. Thanks for checking in will definitely keep you updated x
My mri came back as no evidence of inflammatory disease which is good. My blood test for hla b27 has not come back yet which is strange so he is going to chase it. I’m really surprised as the severity of pain in my back and neck alone is unbearable at times on top of every other symptom.I have a face to face appointment with him next week to discuss what to do moving forward. He suggested maybe a referral to c.o.p.e which is pain clinic.
I’m happy nothing else to add to the list but also deflated at the fact that this really is something that isn’t going to go away and can’t be cured.
Well that’s good news even though you still have all the pain and other symptoms. When you say inflammatory disease is that rheumatoid arthritis or stuff like that. I was tested several times for lupus but bloods were ok. Let’s hope the pain clinic can give you some help. I bought this neck angel device off e bay for the neck pain but it’s making me dizzy. 😂
The phone appointment felt quite rushed so I didn’t get to ask all the questions that I had Which is why I think he’s booked to see me again next week. The hla b27 I think if it’s present in blood it means your more likely to develop other auto immune diseases ( I already have one) I plan to ask for a copy of scan and report so I can get a bit more insight.
He was very vague to be honest but I was his last appointment of the day I can imagine he couldn’t wait to be done lol
Hopefully pain clinic can help me
Never heard of neck angel I’m going to have a look lol
Brain fog has a lot to answer for!
It’s called neck cloud not angel. Blame the brain fog again!
I have fibro (diagnosed 2016) and signed up around same time to WebMD and get emails through on a variety of health advice/conditions etc. Over past 6 months or so I have received loads of emails mentioning MS vs Fibro, symptoms of MS, types of MS it's making me paranoid especially as my mobility is getting worse (stiffness in legs) and I've had a few falls over past few months catching my feet on slightest thing. I also have hypothyroidism and found out on last blood test I am over medicated (0.98) so GP has reduced thyroxine dose from 125mcg to 100mcg (blood test in Oct) and some of the symptoms of overtreatment can include stiffness, brain fog so I'm beginning to wonder whether a lot of my problems are down to thyroid issues.
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