When I got my fibromyalgia diagnosis in August 2018, (also chronic fatigue syndrome a few months earlier), the doctor was rather offhand about it. He said I couldn't possibly have MS, so that left fibromyalgia and his advice was literally "just do a bit of exercise" and that was it. Just like with all my other issues, I was given absolutely no support. I am on a lot of pain medication and have since then had both Gabapentin and Tramadol increased by two other doctors. I am also finally getting help with my spinal issues.
I do not know which pain is caused by which issue anymore as it is all so relentless.
The thing that I am concerned about is that for the last few months I've been having issues talking. It's hard to describe, but my mouth and tongue feel weird, I feel like I suddenly have a lisp and my mouth struggles to move in the right way to pronounce words correctly. It isn't constant, thankfully, but appears if I try to talk for any length of time as part of a general conversation. I did try to tell my mom about it recently, but she said she couldn't hear a lisp. It's weird, because it's not esses I have trouble with, but "th" and I find it rather unsettling.
I was wondering if this was just another fibromyalgia thing and if anyone here has the same issue, or is it something I should see a doctor about?
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Affrael
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Hi personally do not have any speech problems with fibromyalgia. Nor do I remember any reports of others reporting problems. The safest advice would be to see your GP as there are a number of causes and conditions which could cause this. It could be a simple matter of simple hearing loss in some frequency's. It as also been associated with M.S among many other conditions. So please speak with your GP.
I have managed to get a doctor's appointment for 22 March, so will raise the issue if possible, I'm going there with regard to my hand/arm shaking, pain and numbness. I've been referred for conductive tests, already. I'm seeing yet another new doctor, so he may have more inclination to listen.
I had a hearing test a few years ago and found that I can't hear certain tones. I was told to ignore the hearing loss and when I asked if I could get any help, I was told it was my own fault for being an alcoholic even though I'd been in recovery for two years.
I have tinnitus issues I need to discuss with the doctor also.
MS is in the family, that's why I was worried, but the doctor wouldn't entertain the possibility and didn't even ask about family history.
I too have speech issues that comes in waves, it’s like downing a bottle of wine in minutes, I had the nerve conduction test which came back that I didn’t have MS, I am seeing a neurologist soon as I do have auto immune problems that need diagnosing, So you need to push for more tests, we know our body’s best, keep a diary too
Yes, it is a lot like that. You could say I'm lucky I don't enjoy talking and could quite happily not talk for days. It is very up and down, so I can't predict when it's going to happen.
The issue with speech resonates with me, This happens when I try to continue my talk after a few sentences. My brain gets tired so quickly and I have to work extra hard to bring the word out of my mouth, it gets so heavy that I apologise for not being to continue my conversation. I find it extremely frustrating ting ting 😰
Hiya the speak thing happens to me. Not all time thou. I could be asking someone for something and my words get mixed up. I just put it down to all the meds I’m on 🙂
anyone who knows me can work out what I’m saying, it’s only when I goto a restaurant or shop and ask for something and I get the odd vacant look. At least I have texting and amazon to get what I need without much hassle
Hi yes I know what you mean with the speech issues, think it must be something to do with fibromyalgia/chronic pain. I can definitely relate to mouth not moving in the right way🥺
I too have problems, I can hold a conversation but find I can’t talk for very long. The muscles in my throat start to ache and it gives me a headache. I also have trouble swallowing and a twitchy left eye. Have had mri scans for it but nothing came back that would suggest anything. I was told it’s not ms. It’s very frustrating.
Hi, I too have speech problems. I have developed a stutter. Not all the time but when stressed, tired or in a flare up. I also say the wrong words...like asking my partner to turn the mobile round instead of the tv.......going into tesco & getting very upset that they could not understand what I wanted when I asked for 2 floaters.....after going through 2 assistants & near to tears they told me what I had asked for....I was so upset. I had been asking for 2 lucky dips on lottery & had to point to machine to make them understand. The ladies still smile at me when I go in now. Very funny for them but very upsetting for me.
Hello Affrael, I don't have speech problems per say with my mouth but if I have overused my voice it becomes very low as if I have a sore throat which I don't. I would suggest checking it out again with a Dr you trust, may be a side effect of the meds maybe ?
Hi @Affrael Im glad you have another appointment coming up as medics need to be aware of symptoms like this. I have CFS, Fibro and POTS, speaking is a nightmare for me when im in a flare. Word finding is troublesome as is getting sentences in the right order. Then there's what I call cotton wool mouth where my phonic sounds become difficult to say. Also run out of breath before the end of a sentence but thats the POTS. I ask people to email me where possible, its easier to respond without looking thick . I would say you need a referral to a decent neurologist, good luck hope you find answers soon. Xx
Thank you. I keep feeling a bit breathless for no reason. I need to write it all down, I always forget things otherwise.
I have spinal issues too I get this. But you’re tired. Are you doing neck exercises at all. My guess your gabapetin and tramadol cocktail is doing a lot of this. I’m not allowed to take nerve drugs I get reactions like this short my nervous system they don’t know why but it’s happened twice and if you read up on these drugs they can do weird things to some people. Try to strengthen even in pain. If you don’t move you feel good but pay for that later with more pain. That spinal stuff for ya. I really get. I go through does h issues like you’re saying. I try to do chin tucks move my head to arm pits and do resistance stiff with my chin and stuff. I hate fibro I get so stupid.
Yes me to I do not lisp but when I was a kid I has a speech impediment but I managed it when I got older and only stammered when I was flustered however since I have become unwell it is like it has never gone away it is so annoying fibro off means I mix up what I am saying and now I have my stammer back what makes it worse is my partner tries to finish my sentence and most of the time he gets it wrong it was not what I was trying to say I used to do phone work but I have to work back office now and most of the time I am at work I hardly speak cause I dont want the others in my office making fun I use to be very out going talk to anyone now I spend days not speaking at all not even to.my other half
The training manager at my last place of work had a really bad stammer and the one thing I would never have dreamed of doing is a to try to finish his words or sentence. I believe it is incredibly rude to do so and to make fun of it is cruel and distasteful. People need to consider how they would feel if in the same position. I'm sorry your "workmates" are such twots.
I have exactly the same problem with dry mouth & tongue sticking to the roof of my mouth mentioned it to the doctor answer keep sucking sugar free mints .Not very helpful .
Jo, do you also get dry eyes? Or do your eyes feel gritty and they're runny all the time? If so you could have Sjogrens Syndrome. I have it as well as FM and Rheumatoid arthritis. Those are the first symptoms so if you se a rheumatologist mention it! Just a thought as my tongue is always sticking to the roof of my mouth and I always carry a drink and mints just to try to get the saliva flowing as this is what Sjogrens does, stops saliva and tear ducts from working properly.
Yes, my eyes feel weird a lot too. They get watery and sore all the time. I tried to explain it to my mom recently and her reaction was that I need my eyes tested.
The dry mouth is horrible, my lips stick to my teeth and I have to drink a lot of water. I've been trying sugar free chewing gum when out, but to be honest, I don't like the stuff.
Ask for a refund to a rheumatologist at every Dr's visit and when you get a referral make sure you get 6 monthly appointments with them for follow up and support. They can tell if it's Sjogrens either through a blood test or a biopsy through your lip (not sore at all, I had it). The first time bloods don't usually show up but mine did second time. Google Sjogrens Syndrome and look at medical sites only! I'm sure theres a Sjogrens Association or something like that and it was really good. It's common for people with fibro to also have Sjogrens and have no clue. Basically your body doesn't produce the antibodies that produce tears and saliva. They're called roe antibodies and that's what they look for in the blood test. It also affect a load of other things such as joint pain, muscle pain and fatigue!! I asked how I could tell the difference between each thing and he said if I ask you where are you sore and you say everywhere then that's the fibro pain. Harder to tell between Sjogrens and RA. Good luck and be firm with the Dr xx
Sorry haven't been in a while. Check it out on the Sjogrens Syndrome website and see what you think. If so, once this lockdown is over ask for a blood test & biopsy (mine didn't show in bloods but did in biopsy which is common). I drink constantly and love Aldi's spearmint mints, they're milder than any others I've tried. I hate the bit where my eyes go out of focus and I can't read without my specs! Good luck xx
Meds can do that I think. I must have been unhinged one time I went to the doc. He's was saying about fibro being all head n I added about how that might be why speaking was weird n my tounge felt big. Was it a lansoprazole side effect,? A serious one? I think so. He stopped the meds and there is a warning on my notes.
Very random symptom I nearly didn't mention.
Also it is a fibro thing to randomly feel like you can't speak properly. I laugh saying I put the wrong teeth in. Words g et garbled come out wrong or just word finding. In front of a judge I was reduced to playing the describing game. With actions. Word were hiding. He thought I was nuts or acting even. The doctor beside him thankfully saw fibro full blown.
healthunlocked.com/fibromya..., hello, did they say you Should wear any hearing aids for you losing your hearing at all ?? yes the tinnitus , mine seems to be active all the while but mostly I get used to it. If you feel this doctor in general didn’t seem to give you any support or advice perhaps see another one and differently go back and seek answers to why your speech has changed, let us know how you get along, when we get answers does give us a piece of mind what is going on in general and yes doc should listen to family history take care . There is a link above if you want to lock your future posts.
Don't get anxious. My rheumatologist told me to Always question anything I didn't feel was right as it's my body and only I know what's not right lol. I've asked for a second opinion many times and got results because of it. I just say I'm sorry, I disagree and would like a second opinion. Never had a problem. Remember they pee and poop the same as we do and can make mistakes or never heard of what you have so try someone alse and try to relax xxx
The only way to really rule out m.s is a mri and lumber puncture, i have had speech issues but its more forgetting a word and not getting it out correctly than a lusp.
I think I would recommend a trip to the dentist. You see I had similar problems and when it was investigated I was found to have a nasty infection on the site of an earlier extraction. If that were the case you would probably have other symptoms too, bad breath, perhaps loose teeth, burning up some days, a sharp pain in one ear, and scaly dry skin behind one ear. Even if that doesn't sound like you the dentist would still be a good bet given that your mouth is at the heart of it.
Nice idea, but I was at the dentist last Thursday and my teeth and gums are okay. I spend a lot of time looking after my teeth and gums, using interdental brushes four times a day, floss, etc, as it's quite amazing just how much your mouth health can affect the rest of your body.
Just wondering if you have had your vitamin/ mineral levels tested? I have fibro and a number of autoimmune issues that result in compromised absorption of vits/mins in gut, and have had over the years problem with speaking and hearing. Tinnitus for eg can be result of low B12. GPs for some reason tend to be reluctant to test such things, or ignore the results when ‘within range’ but low. With my other ailments I frequent a sister healthunlocked forum and many sufferers there do private Vit D, b12, ferritin and folate tests thru labs like Medichecks or Blue Horizon. Some of my shaking tremors have improved with more B12, and either one or combo of these supplements has helped with hoarse voice etc. Worth a try. I also use a gentle chiropractor ( McTimoney trained) or spinal manipulator every 6-8 weeks to ease pain/ numbness that helps.
Very true about docs being reluctant to test for vitamin deficiencies, my son was rushed to hospital unable to talk or walk and with shaking hands, first diagnosis was epilepsy, it took them several days and lots if tests to find out in the end what he had was dangerously low B12 plus other vit malabsorbtion problems.
After intravenous B12, and B1 within a couple of days was back to normal,well almost because his memory is not quite as normal but thankful that none of the other symptoms were permanent, he must take B12 permanently to keep his levels up. Re Fibro I have heaed that some docs are treating it with thyroid drugs with some success.
I did end up with rickets a few years ago, due to not having any dairy for five years, thanks to being lactose intolerant. Strangely, it was the orthopedic specialist who found it, along with hypothyroidism. Thanks to him I finally got the medication I needed.
Once my calcium and vitamin D levels got to a reasonable level, which took a surprisingly long time, I was advised to take vitamin D3 over the counter.
More recently, my iron levels were extremely low and I had to take strong iron tablets for at least four months. The first lot raised my level from 17 to 18 and the second lot seemed stronger. My selenium levels were bad too. The doctor actually advised me to eat more red meat, as I generally stick to chicken and fish.
My last round of blood tests were all fine. I was hoping for a vitamin B12 deficiency. One Doctor blamed all my fatigue, etc on hypothyroidism, saying it slows everything down.
Being hypo you could have malabsorbtion so its essential to keep checking vitamins. I was given a course of high dose vit D by my doc and my level of D was then high in range, after that I took 1000mg day but on my next test 6 months later my D was only two points inside the minimum of range so now I take 3000 per day, I have yet to see if this will keep me at optimal level.
Just to say, that with M.E and Fibromyalgia most of my life, I first had speech difficulties back in the early 1960's and ever since, sometimes losing my voice completely for two months on end. In my case, having been medically checked, the verdict was that my muscles are too weak to operate my vocal chords, so hope this will not eventually be the verdict for you, as yours seems different somehow. Love Roselil
Omg !!! I have the same issue !! Its a side effect of Gabapentin but even though she took me off to try Lyrica its still happenening. Its not constant and it has to be a linger conversation. I call it slurring my words. So she took me off lyroca for a few weeks too see if it stops. Its hasnt as of yet. She said she may have an idea what too check for next. Im so glad I have found someone going through the same thing. I dont go numb its just as im talking my words just slurr or something I cant really explain
Hi Affrael, I have the same thing. I forget words, mix them up and it's always when I'm getting tired or I'm having a flare. At the moment I'm hypersensitive so trying to sleep is almost impossible. If I llay on my side my hip pain from rheumatoid arthritis flares and if I lay on my back it's like laying on glass! I hope you get referred to aneurologist or Rheumatology specialist for support. Xx
I have had this in the past and also have difficulty talking loud when theres a lot of noise in the room! I have also got the feeling of having a stiff mask like face that can mean I don't open my mouth as wide to pronounce words. Luckily not as bad as I have had it and I've changed pain meds a few times so maybe it was related to a drug I was on. I still get muddled up words and get stuck mid sentence when I can't think of the word but anyone who knows me just accepts that's part of fibro especially when tired!
hi, may not be directly related, i have fibro, and multiple other diagnosis, i too lose words and get muddled like the normal fog, but also have recently lost the pronunciation of my R's and W's its not all the time and i find its when im singing a song, ive never had a problem with speech before, i will sing along to a song that i knew all the words too and i will the pronunciation , its weird because it seems to be the R's and W's its like my mouth moves funny its really hard to explain. Im under a neuro have been for 7 years, that started because my face went numb, i have lesions, he thought it could be Ms but not had anymore attacks so he doesn't now. Hes very dismissive of any new thing i tell him, and i he doesn't believe in fibro as theres no test! Anyway i also i have tinnitus and hearing loss, and a spinal injury, (dehydrated disc slipped disc) arthritis, and a multitude of other things! ive mentioned what i can remember others saying just thought it was an interesting post so thought id add to it. x
Yes, it's really hard to describe, in a way it feels like your mouth doesn't remember how to form words.
I've just found out I have a popping disc and have been referred to a specialist. I have other spinal issues and it seems that once you have osteoarthritis in one place, it becomes contagious and spreads everywhere. (I have a strange sense of humour).
I had a 'lisp' when my tongue was swollen from a B12 deficiency known as 'pernicious anaemia' (an autoimmune disease). Felt like I was tripping over my words. Much later I developed an inability to find the correct word when speaking, a weakened voice, and worsening crushing fatigue and aches all over. It was all misdiagnosed first as 'ME' then as 'Fibromyalgia', so it was decades before I got sorted and ended up unable to walk. All gone since I dealt with that. Sorry if someone else has mentioned this - I haven't read all the replies.
That sounds a lot like me. I do get allergy related facial swelling, hasn't gone to the tongue yet. That must have been a pretty scary thing to go through.
I love words, my current favourite is juxtaposition. I can't explain it, but I get enjoyment when I hear other people use the these words. But lately, I'm forgetting my words and I do stutter a bit too. I can forget what I'm talking about half way through a sentence. It makes me feel stupid and that I'm heading towards full on efasia. I used to joke that my IQ is only 120. Now its: I used to have an IQ of 120, I wonder where it's gone. 😂
Yes, I know where you're coming from. I'm sorry you're going through it. I found it all very frightening and thought I was heading for dementia. Unfortunately my doctors kept saying my B12 (and thyroid) levels were normal when actually they were not. People with autoimmune illness need B12 and thyroid to be at upper quarter of range. My autoimmune illness is pernicious anaemia (causes low B12) and it went undiagnosed for decades. My B12 and thyroid levels were below range, but still 'ok' for GP. I didn't know any better and accepted the 'fibromyalgia' and 'ME' diagnoses for years.
My MCV (you'll see it on your full blood count in your blood tests) was very elevated to 110 (an indication not enough B12 getting to body cells) and it was simply ignored. It's now 93. I wasn't tested for antibodies for pernicious anaemia until I insisted (too late to stop my deterioration), but intrinsic factor factor antibodies and parietal cell antibodies were all elevated. In a way I was lucky - the antibodies sometimes don't show up very consistently and people remain undiagnosed. But I also (eventually) insisted on an Active B12 test and Homocysteine and all these together confirmed the diagnosis of pernicious anaemia (an inability to use B12 from food properly). I had to keep pushing and pushing for the diagnosis because my very low B12 was not low enough for them and they were clueless about the other tests. They were much in favour of 'Me' or 'Fibromyalgia'. In fact they said I had both.
I can walk again now, but still have a way to go. I get fatigued very easily, especially after exercise, but it used to be that I couldn't exercise at all without ending up bedridden. I have a way to go with sleep too. I get really good phases now with plenty of deep sleep for weeks on end, but then other phases where I still have circadian reversal. It's on the upward trend though. It's a very slow recovery.
I had got to wheelchair stage so the improvements in balance and mobility and exercise tolerance are very welcome. I'm happy to say the swollen tongue went away very quickly and the word loss is not happening anymore.
This has taken six years so far of very high-dose B12 (methyl b12 - the active form of B12 for healing neurology and brain), methylfolate form of folate (folic acid made me very much worse) and a host of high-dose minerals and vitamins, including vitamin D, which I was also very low in (again, common with autoimmune illness).
I have often felt like giving up, not to mention the financial difficulty of keeping it all going, but I'm making clear (eventhough slow) progress. Another improvement is for e.g. I had a chest infection after Christmas which I managed to fight off without antibiotics. This is the first time in decades that has happened and I rarely catch infections now. My lymphocyte count (important for immune system health, it's listed under full blood count when you get your blood tested by GP) has increased hugely and all my blood markers are very good now. I hope some of this might help. It may not be of interest, but maybe somebody else might read it and find it helpful. Very best of luck to you.
PS Another of my mis-diagnoses was Sjogrens syndrome. The dry mouth and eyes etc are all fixed now, thankfully. I'd had to give up wearing contact lenses. MS was investigated and ruled out. Rheumatoid arthritis was another misdiagnosis based on an elevated rheumatoid factor (RF) - now completely normal and not a single ache or pain anywhere - one of the main reasons I persisted with the B12 etc. One of the first things to happen was general body pain disappeared after a few weeks.
I have difficulties with some sounds and speech,I cannot pronounce TH ,THR or BR properly .and If on th e phone I need to spell out the name of my street because I cannot pronounce it properly.My mouth is always dry,
I attended Speech therapy which helped to some extent.MY GP referred me the first time but you dont need a GP referral,Contact your SALT -speech and language therapist and have a chat with them.It may help.,
I dont know the cause of my difficulty in pronouncing some sounds but i have oesophegeal conditions and jaw deformity and my mouth is nearly always dry which affects my speech too,Boiled sweets help with the dryness.
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Explaining on-going pain issues with GP
