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MS or is it Fibromyalgia?
18 Replies
shanny - September 12

Hello there,
I'd like to ask people's advice if thats ok, I was diagnosed with Primary Progressive MS last May (09), and after a year of symtoms i was in a way relieved when i got the diagnosis of MS, as it explained everything i was feeling etc.
I had a clear MRI scan, clear VER, but a positive Lumber Puncture and EMG test. But to be honest the pains i have been getting on my body don't seem to tie in with MS. I have pains on either side of my body, each in the same places, eg elbows, fingers, hips, neck, back etc.
So i looked on this website and in a way i'm thinking that this is maybe what i have?
My question is, are the two illnesses sometimes diagnosed incorrectly?
I also have balance problems, muscle weakness, cognitive problems, i am worse in cold weather (with MS you are often worse in the heat), muscle stiffness, it takes me a while to losen up in the morning, a runny nose almost continuously, muscle twitching/vibrating, my legs stiffen and sieze up after i have either been on them a long time or when i have sat for a length of time, really bad tightness in my neck and shoulders, and leg cramps. (apart from that i'm fine!!!).
I wanted to try and find out as much as i can about it before i mentioned it to my doctor/neurologist as i don't want them thinking i'm doubting their words.
Any insite or clarification on tests that may prove i do have MS would be greatly appreciated (for instance, because my Lumber Puncture was positive does this definately mean it is MS?).
I hope i haven't waffled on too long, or shouldn't be on this forum, thankyou, Shanny


Stacey373 - September 13

Hi Shanny - I don't know a whole lot about MS, so I can't give you any information about that. I do know that Fibro mimics alot of other diseases (like Lupus and probably MS) I actually thought I had some sort of muscle disease before I was diagnosed with fibro.

Usually to get a diagnosis of Fibro, a doctor will test you for EVERY thing else that it could be and rule all those out first. It seems like Fibro is more of a "last resort" diagnosis.

There is no real test to prove you have Fibro. One of the things a doctor will do is give you the "Tender Point Test." Which is they apply slight pressure and you have pain in most of the 18 tender points on your body. Another thing they can do is check your Vitamin D levels. Most fibro sufferers are Vitamin D deficient.

The major symptoms for Fibro are - Chronic pain for at least 3 months (most of us have had it for YEARS before being diagnosed), pain in all 4 quadrants of the body (upper, lower, left & right side) It doesn't have to be at the same time, but it will show up all over your body for no apparent reason. Extreme fatigue (having problems sleeping without medication) headaches and migraines all the time. And your body aches like you have the flu. (it's early and that's all I can think of right now! But I think that's all of them!) Oh! I also want to say that any kind of stress will make you hurt and feel worse.

If I were you, I would definitely get a 2nd opinion on the MS diagnosis. I've always assumed that the ONLY way you are diagnosed is if you have lesions on your brain...but I could be wrong about that. Like I said, I don't know much about MS. I have read posts on this forum about people being mis-diagnosed with Fibro and it turns out they really have something else wrong with them (like Lupus or MS) I wouldn't worry about upsetting your have EVERY right to question them and get a 2nd opinion.

What medications are you on right now? I'm just wondering if you are already taking some of the meds that Fibro people take.

That's all I can think of right now...If I think of something else, I will write again! Take Care, Stacey :o)


shanny - September 13

Hi stacey,
Thankyou for your reply. It was really interesting to hear first hand from someone with Fibromyalgia. It's really strange as i don't want to doubt my diagnosis of MS but i would like to know if it is in fact Fibro or not. I think it's the amount of pain i'm getting now that makes me wonder.
Because it is on either side of the body in exactly matching areas, especially the elbows, neck, fingers and lower back.
Also when i had my MRI scan i only had one done of my brain and not my spine, and it makes me wonder that if i did have one done of my spine would it in fact show any lesions? And if not then it strongly means that it probably isn't MS.
I'm not sure i have enough courage to force the issue with the neuro tho!!!!
I have had symptoms now for two years and the pains are getting worse steadily, but because i was diagnosed with primary progressive MS there is no known drugs that work/help etc for that type,(unlike if you have RRMS where there is quite alot of drugs available), so to be honest i don't take anything but i know if things get much worse i will have to start taking painkillers, but it worries me that i will have to be on them for good, and i'm so stubborn that i don't like giving in!!!
I do exercise/stretch quite alot, and i like to sort of meditate/relax as this helps the pain a bit, also walking my dog in the country helps too!
Do you mind me asking what you take/do to help your pain etc. I was looking into LDN to help the MS and then i read that it can also help if you have Fibro too, so i may look into it a bit more.
Also, another question if you don't mind (!!), if you do have Fibro do you have it for life, or can it go after some time? I have only just starting looking into it and still don't much about it yet, so any information would be great, so thankyou.
Take care, hope you're keeping ok, Lisa


Stacey373 - September 14

Hi Lisa! From what I understand, Fibro never goes away. It can get progressively worse as you get older, or sometimes it can get better as time goes on...but it never goes completely away. With me, personally, I've noticed I've gotten worse the older I get. I have to assume that as you get older it's normal to get aches and pains....with fibro those aches and pains feel 10 times worse.

Honestly...I rely on my medication to feel better. I take quite a bit of pain meds, but without them I'd be in I choose to take the drugs and be out there living life...instead of always in horrible pain and living my life in bed. (did that make sense? I'm really tired this morning! LOL)

I also stay active. I'm almost always up and going in one way or another. We live on 30 some odd acres in the country so I'm always walking my dogs or walking with my kids...even if it's just a little bit some days.

The one thing I think that has helped me the most....probably sounds dumb...but it's having a positive attitude. I've spent alot of years feeling sorry for myself and recently my attitude completely changed. I think I was always fighting against this illness (when I didn't know what was wrong AND after being diagnosed), and now I've learned to live life with it.

I also think that by understanding what's wrong with me...I've been doing so much better. I used to push myself as hard and fast as I could possibly go when I felt good...tried to get as much done as I could because inevitably I would get a bad headache or something and would be down in bed for days or weeks again. Now I try to stay at a steady pace...If I wake up some days and I'm hurting more than normal, I know what's going on so I try to take it easy for awhile until I feel better again.

I've been thinking about you since I read your post yesterday and it's completely possible for you to actually have both MS and Fibromyalgia. alot of times people get fibro because of some other disease or illness or a traumatic injury. I actually think mine began with a couple car accidents and then I got ALOT worse after my 3rd C-section almost 10 years ago.

About the medications...I know alot of people try to deal with chronic pain by using only natural remedies. Which is fine for them...I'm the type of person who thinks if there's a pill that will make me feel better...I'm gonna take it!

If you think you have Fibro, you should really talk to your doctor about getting some prescriptions. I don't know about MS, but with Fibro you will only feel worse if you don't do something to relieve your symptoms. The most common meds for fibro are - an anti-depressant, sleeping meds, pain meds, Vitamins, and alot of people also take neurontin and muscle relaxers.

Cymbalta is the most common anti-depressant because it's also supposed to help with the Fibro pain. I couldn't take that one so I take Lexapro. With Fibro you absolutely NEED some sort of sleeping meds (even natural remedies work) with fibro it disrupts the regular sleeping cycle and causes more pain because of this. The pain meds are for obvious reasons...I take Norco 10/325 and now I'm adding in 1 or 2 methadone 10mg tablets on my bad days. As I said before most Fibro sufferers have a Vitamin D deficiency...I take a prescription once a week. But I also take Vitamin B Complex and magnesium Oxide daily. Neurontin is a nerve blocker. I used to take it, but I don't anymore. and last, I take the muscle relaxer flexeril because of my constant headaches and neck problems.

I strongly suggest you get a second opinion about the MS. It's entirely possible that your doctors made a mistake. I think stressing and worrying about it will only make you feel worse....and you should feel 100% confident in whatever the doctors tell you. it's time for me to get another cup of coffee. My husband took my son and a couple other boys to the midnight release for the Halo video game and they STILL haven't been to bed and my house was very noisy last night so I didn't sleep too good! (that's my excuse if this post doesn't make much sense! LOL)

Feel free to ask any questions you have! Take Care, Stacey :o)


shanny - September 14

Hi Stacey,
Thankyou for your post, it's really kind of you. I do agree with you about taking painkillers etc, i think i'm just dragging my feet as i can see me taking them for life once i start!! I think i have to accept that the pain is NOT going to go away now!!
I understand what you mean about the pain at night, this is the worst for me. My elbows, neck and back are normally so bad that i can wake up about 10/15 times a night, which normally make for a very grumpy Lisa the next morning (as my other half will agree-bless him!!).
To be honest, i was thinking about things and i thought at the end of the day does it really matter if it's MS or Fibro, the symptoms are still here and quite similar and as you said Fibro is for life as is MS so maybe i should just get on with things and deal with symptoms/pain etc as they happen. I will mention it tho to my Neuro when i next see him and just see what he thinks?!! (I'm sure he'll love my theory!!).
I also know what you mean about being positive, i try my best most days (not always tho!), i do believe that everything happens for a reason (I'm not quite sure what mine is at the mo but i'll get back to you when i find out!!!).
The day before i was diagnosed with the MS i was diagnosed with Breast Cancer, so all in all not the best week!! So the last year or so has been very trying with all the chemotherapy, radiotherapy, other treatments etc for the cancer so now i feel i can concentrate on the MS(?) at last as it sort of got put on a back burner to the cancer.
I also echo what you said about natural remedies versus a pill!! I also stay active as much as possible, i work 3 days a week, walk my dog alot, exercise/stretch as much as possible as i find it really does help with my stiff legs etc.
I had heard as well that you could have both illnesses at the same time, and knowing my luck recently it probably is!!!
I'm in England and i think you are from America? (i hope i've got it right, does it matter if i'm from England and i'm on the forum as i think the website is American too).
Well, i have a doctors appointment in a couple of weeks so i will ask about painkillers then and take it from there. To be honest i can't imagine life without pain now, it would be so good!!!!
Thankyou for all your help and advice and if it's ok, i'd still like to come on the website and chat occasionally, but i understand if you don't want to so either way no pressure ok!
Good luck with your Fibro, i do hope that one day a cure will be found for all these illnesses, fingers crossed anyway!!! Take care, all the best, Lisa x
P.s Three C-sections, jeez your brave!!!!I take my hat off to you!!


axxie - September 15

Hey Shanny, MS or Not, it's confusing at best, you are at an impass and not sure, you are doubting the diagnostick, I would be also. At one point, after the MRI and other tests, they diagnosed me with MS, but it all pointed to something different. The point I'm making here, is, you will need to ask for a second opinion. It's is normal to ask for a second opinion, actually doctors don't mind that you ask for a second opinion. It confirms what the first said, or say's it might be something else.

MS: Multiple sclerosis (MS) diagnosis is extremely difficult. The reasons for this include: ·More than 50 symptoms are linked to MS, and each person develops symptoms differently.
·Many of the symptoms mimic problems that occur with other diseases.
·There is no blood test for MS yet. ·Symptoms usually come and go. ·Many symptoms are vague and hard to quantify, such as fatigue, sexual dysfunction, depression and cognitive difficulties. These often get attributed to stress by general practitioners, and patients may never be referred to a neurologist.

There are two basic rules for diagnosing MS:
1.The person must have had at least two relapses (an episode where symptoms were present). These episodes must have been separated by at least one month. 2.There must be more than one lesion on the brain or spinal cord.

Multiple sclerosis means just that -- multiple (more than one), sclerosis (areas of damage; scarring or hardening).

If you have had an MRI, that indicates demyelination, Neurologic Exam; Evoked Potential Testing, and a spinal tap or a lumbar puncture. Then I would tend to believe the diagnostic. I would rather know for sure then just be unsure, and always asking is this possible. At least with a firm diagnostic, you can plan your life, accept it, and then go on from there. Yeah I know MS is no fun, and depending your age, etc, MS can really turn you for loop. But my way of thinking is, if I accept what I have, I become stronger, as I will score the internet and get as much information as possible and get on a treatment plan asap.

Diagnostic Categories
·Negative: Negative means negative. You don’t have MS. It is possible for the doctor to give this diagnosis only when another definite diagnosis is made that can account for your symptoms.
·Possible: This means that you may have symptoms that look like MS, but your tests are normal. No other diagnosis which accounts for the symptoms has been confirmed.
·Probable: Many people fall into this category when they are first seen by a neurologist. You may have symptoms that look like MS and have had two separate episodes separated by at least a month, but normal findings on an MRI. You could also have an MRI that showed only one lesion in your brain or spine. In this case, your doctor will probably recommend repeating the MRI after a certain period of time (for instance, 3 months) to see if any other lesions appear. Depending on how certain your doctor is that you really do have MS, he may recommend that you consider starting an early therapy.
·Definite: Your case fits the diagnostic criteria above. You have had at least two attacks, separated in time, plus at least two areas of demyelination. Believe it or not, many people are relieved to receive a definite diagnosis of MS.

I hope you gain confidence and you gain encouragement by asking your doctor for a second opinion. Do tell us what is happening and let us know what the outcome it is.

Good Luck, from Axxie


shanny - September 15

Hi Axxie,
Thankyou for replying to my post. You're right about the diagnosing is hard etc. I felt quite lucky in a way to be diagnosed in a year as some people have to wait for years and that must be so hard.
I only had a brain MRI which was clear but as i was told i have Primary Progressive MS (PPMS)which means you never have relapses just progressive symptoms constantly, apparantly most of your lesions are found in your spinal cord as most of your problems involve your arms and your legs unlike the Relax Remitting MS (RRMS), where lesions are more commonly found in the brain as the problems can be more to do with the eyes/cognitive problems etc especially when replapsing.
My Neurologist did say that at a future date he would repeat the MRI as it was very strange that mine was completely clear. I know he said the Lumber Puncture and EMG were positive and i do respect that, i just never thought that with MS you would get so much pain in exactly the same places on either side of your body.
I am due to start on LDN soon hopefully and i have heard it is good for both illnesses so hopefully one way or another it will help!.
To be honest i have been mulling it over all week and i think i have decided that maybe it isn't that important what it is, as at the end of the day maybe i should just get on with treating whatever pain/symptoms that arise!
Mind you i will broach the subject to my Neurologist when i next go and see what he says!!!
Take care of yourself and thankyou again for replying, Lisa


Stacey373 - September 15

Hello! we have people on this forum from all over the world and quite a few from England. Even if you don't have Fibro, you are more than welcome to be on this site...We are all here to get advice and talk to people who understand what it's like to live with a chronic illness and to just not feel so darn alone!

I kind of disagree with you when you said that it doesn't really matter what it is. I really think that by knowing exactly what you are dealing with, you can find better ways to handle the symptoms. I guess if you are treated the same way and are prescribed the same meds for both illnesses...than it may not make much difference. But it's still better to know than to always be questioning it in the back of your mind. When I was diagnosed with Fibro, I didn't need to get a second opinion because the diagnosis matched my symptoms almost exactly and it all made sense to me (finally!) But if I had any doubt, I would not hesitate to see another doctor.

Also, there is no shame in taking pain pills. And if you have to take them for the rest of your life...then so be it! it sure beats feeling lousy and in pain for the rest of your life!

I hope you do figure out what's going on....Take Care, Stacey :o)


shanny - September 15

Hi Stacey,
Thankyou again for replying. People seem to be very kind on this site and welcoming.
I think that one day i will be looking into this further and then hopefully i will find out either way what it is.
Also if i can get the pain under some type of control that may help too!
Take care of yourself and thankyou again, all the best Lisa


axxie - September 16

Multiple sclerosis is a complex disease. While it is most often diagnosed in young adults, aged 15 to 40, we know that it affects children, some as young as two years old, there are older people who are also affected by MS, but do not ever get second attack.

As we all know, there are no cure with MS.

Did you know ...

Canadians and the northern Europe have one of the highest rates of multiple sclerosis in the world.
MS is the most common neurological disease affecting young adults. Women are more than three times as likely to develop MS as men.

. In early MS, it is possible, though uncommon (about 5%) to have a normal appearing MRI picture. Over time, with repeat MRI, characteristic lesions do appear, and if not, the diagnosis of definite MS must be reconsidered. If a second MRI is needed to confirm the diagnosis, it is important that it is done after a sufficient period of time since the last one, usually at least 3 months.
Evoked Potentials (EP’s - visual, auditory and somatosensory) is a test that measures the speed of nerve impulse conduction in the pathways of the central nervous system(CNS). In MS, nerve impulse conduction is slowed related to the myelin damage, and EP’s can record this slowing.
It is important to remember that there is no one test that can be used to diagnose MS. The diagnosis of MS is one made only once other potential causes for symptoms have been ruled out. In addition, there are clear diagnostic criteria which must be met for a diagnosis of definite MS to be made.

There are 4 disease types identified in MS: Relapsing Remitting MS (RRMS)
Benign MS
Clinically Isolated syndrome (CIS)
Primary Progressive MS (PPMS)
Secondary Progressive MS (SPMS)
Progressive Relapsing MS (PRMS)

Clinically Isolated syndrome (CIS) refers to a single episode of neurological symptoms. This is also sometimes referred to as probable MS. Often, on investigation using MRI and/or evoked potentials, the doctor finds laboratory evidence of a second attack which then defines RRMS. In very early MS, it may be necessary to follow things and repeat investigations a few months later to find evidence of a second defining MS attack.

This is the one that I was told I have. Now time has passed and I have more pronounce problems, but they say I am too old to have MS.

I have two new doctors all are worried about MS, and they think that it is possible that I may never progress, they want another MRI done, to find if any of the brain legions have changed.

The first doctor didn't want to give me anything to help me, as they were not sure, now again I am faced with another MRI and uncertainty.

I know how you feel, and I'm glad that they are allowing you to have treatments.

Do keep up with us, as it's the only way of finding out how you are doing.

Good luck to you and hope you have treatmens that will give you a long time of being normal.

Good luck Axxie


chucksusanandgrace - September 16

I remember when they did a lumbar puncture on me 11 years ago,they were checking for monoclonal bands. Here is what I found online:

Oligoclonal bands are also found (in addition to MS)in:

Systemic lupus erythematosus
CNS Lymphoma

I'm just curious if you have thought about Lupus at all? That disease can also mimic MS and fibromyalgia.

I agree,I would get a 2nd opinion for sure.

Blessings on this journey,



Fantod - September 18

Shanny - There is nothing wrong with getting a second opinion about your original diagnosis. Gather up your medical records to save time and money and go and see someone else. However, we have had people on this board that have both Fibromyalgia (FMS) and MS. It is possible that FMS is an underlying condition that was missed in the original diagnosis of MS or has developed after your diagnosis. I wish you the best of luck and keep in touch.


duhda75 - September 18

AXXIE, Stacey373,Susan and Fantod

I just wanted to say thanks for your informative info, and for such positive words of encouragement. I amn fairly new to these forums and I find them to be very welcoming and helpful as well. I feel nobody around me know the struggles I go through every day. We are all in this together. It really helps knowing there are other people out there going through the same condition as you. I can realte to that and it helps knowing that nobody will judge you on how you manage ur pain. I do have my twin sister to talk to as she has FM also. But, sadly we live in different states. So we call each everyday sometimes numerous times to vent, LOL. But it helps us to know we have each other.

Good luck to all of you:0)


shanny - September 19

Hello there,
I'd just like to say a big thankyou to you all for all your help and kind words in these posts. It really does help to know that there are people out there living like you do, with pain, uncertainty etc and it really makes a difference, so thankyou.
I wish you all luck with your Fibro, take care Lisa x


jezz - September 20

Hi this is my first time of using this sight (or any other) .I live in england and at the moment i am sat under a duvet with very stiff legs and soreness throughout my body any cold on my legs makes them go into spasm which can end up with me in tears. I got tested for MS (1 MRI scan that they forgot to put the contrast dye in!) which came back normal. The next time I saw my neuro he said it wasnt owt life threatening and signed me off he was very rude. I am waiting to see a rheumotologist now as well as going to the pain clinic. Some days i cant even walk up the road so feel very isolated and can be left feeling wiped out for days on end. I try to stay jolly but can end up snapping at people. I am due to have a bladder op this week as i retain and can have overflow problems when i dont even know its gona happen (very embarassing). I used to hold a very sucsessful job which i have been away from for 9 month. I also suffer from severe constipation, numbess from my lower back to my hip and down my right lower half,servere muscle spasms and jerking day and night I take clonzepam for this and burning throughout my legs which i have been prescibed pregablin which as worked wonders for that... I also have to take 3 kinds of laxitives 3 times a day as well as tramadol topped up with paracetamol. My memory also isnt good and i fall alot or drop things. I burnt my arm the other day as my arm went into spasm and gripped the pan lid normally my other half does the cooking thank goodness hes a better cook than me lol. I am at a loss what to do now all i want is to get on with life

PS i am due to get married in 7 month and dreading the walking and the reception due to tiredness


shanny - September 20

Hi Jezz,
I'm sorry you're having such a bad time, you sound so down (i'm not surprised).
This whole is it this, is it that nearly drove me mad when i was having all these different symptoms, so i do understand where you're coming from.
Do you think you could ask to see another neurologist? You are perfectly within your rights to do so. I know people with MS that due to rude/arrogant neurologists etc they did that and managed to get a much nicer one who really listens to them.
I'm also from England -Surrey!! I also had an MRI scan that came back clear but it was when they gave me a Lumber Puncture that they said i had MS, so maybe you could ask for one of these or the other tests that they do for it? I came on this site to ask people's advice as i have been getting alot more pain throughout my body and when i researched Fibromyalgia it was really similar in many ways.
I really hope you manage to get some answers/relief soon, it must be a living nightmare for you at the moment. Just try and trust that one day you will know what it is and then hopefully you can get some proper help/relief.
I know in the first year or so until i was diagnosed life was awful, but looking back i know that stress made me alot worse. (Hard not to be stressed tho!), so more easily said than done, if there is anyway that you can try and reduce the stress a bit it may help a little bit (totally understandable if you can't tho).
I just wish you all the best, and i really hope that things get better for you, take care, Lisa x


axxie - September 20

Dear Jezz, wow, you are having a fair bit of a problem and need to know what your problem is, I would ask for a second opinion, I would deffinately ask for a lumbar puncture if bands are present it's an indication that your positive that you have ms. I know no one wants to be diagnosed with ms, but the outcome of knowing outweigh's not knowing and not being helped with drug therapy.

It's imperative that you get a few test done, one is the lumbar puncture, the second would be a complete neuro work up and MRI of the brain, and then there's the evoke potential test. Everything is mild in testing won't hurt until you get the lumbar puncture, that has to be the worst, so keep that one at the very last, and ask for a certified radiologist that will insert dye in your back spine to give him a better picture of where he should do the lumbar puncture.

I know I had the test, and was very grateful that I had a radiologist that did the dye test, it was almost uncomfortable but I was deffinately not in pain.

At one point I was going through lots and the rheumy, doctor and neuro all thought I had MS, but thankfully it would seem I never had a second episode, so I have been diagnosed with Fibro. I know full well what you girls are going through.

Do go see a second neuro and don't be fool, but the testing that have already been done, a second neuro, will make you pass other tests.

With MS, you need to be treated the faster the better, you don't want to wait to find out, and find out that you could have gained better momentum with your drugs compounds that could have helped you and now cannot but you have surpassed the stage.

Please for all of you who think you are battling MS, go seek a second neuro exam and get them to do second tests. The faster you are confirm, the faster you will start treatments.

Good luck to you and lets us know how you do....



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