How many of you have long term chronic fatigue& head ache?

Specific Illnesses & Conditions VM/MAV
1

Hi Guys n Gals,

I know not many people have a daily headache, so I’m interested to know how many people do. If so, how long have you had daily headache for? Did it start before the big bang of vertigo came along?

Similarly, has anyone else been suffering from long term fatigue? When I say fatigue, I mean, so tired you can hardly keep your eyes open through the day, find it difficult to do daily activities, ache like you’ve run for miles though you’ve done bugger all. Unrefreshing sleep is daily.
And I’m particularly interested to hear from anyone who, like the headache question, has experienced this for years before vertigo hit.

Basically, I can’t remember having a headache free day and I can’t remember waking up and feeling refreshed at all- am permanently tired beyond normal. So I would say this has been the case for me for at least 12 years- i.e 10 years before my vertigo hit.
(Of course- I have been to my GP off and on complaining about this since it started, to be fobbed off with the odd blood test that was clear every single time.)

Would like to know if anyone else is the same.

Merci beaucoup,

MMx

2

Moi! Daily headache and fatigue.
No days without headache or days of feeling refreshed. Little zombie…

But this started after the first symptoms.

3

I don’t have daily headaches, I get about one or two per month but recently they can last 2 or 3 days each!

I suffer from the fatigue. If I do very little then most days it isn’t too bad but it was awful when I was working with MAV to the point I thought I had CFS. I get very easily tired and sometimes feel exhausted for no reason. I need regular rests. I get about 10 hours sleep per night. I wake refreshed but it doesn’t last long once I get up and start doing things. It takes me a few hours after getting up to build up my energy. I have been someone who gets tired fairly easily all my life and it was a bit worse the year before MAV started but as soon as this all started it went loads worse. The day I got dizzy was the day my fatigue went really bad - into a different league of fatigue to normal tiredness.

I am also quite weak and unfit and when I tried to do exercise at home a couple of years ago I got this thing where my diaphragm got all tight and I couldn’t breathe properly. I had to rest for weeks to get it back to normal. I also got these stabbing pains and aches round my heart and into the back of my shoulder/ribs. It can flare up sometimes and I have no idea what it is. My heart is fine apparently.

Same with neck pain, I had it pre-MAV but when MAV hit it went through the roof x

4

could you have fibromyalgia that started pre-mav? has any dr. suggested this, with the fatigue and muscle aches? have you ever been sent to a rheumatologist?

5

Whenever I’ve asked a GP, neurologist or Dr S about why I feel or still feel despite treatment, so tired all the time, and ache so much, they say:

GP before diagnosis- Don’t know, there’s nothing in your blood tests, you’re fine. Maybe it’s stress.

Neurologist- I don’t want to investigate extreme fatigue until we have treated you, got migraine under control and you’re off meds as it could be migraine and/or the side effect of the medications you are on.

Dr S- Same- tiredness can be symptoms of migraine variant and side effect of propranolol, norttriptyline and topamax.

BUT, I’ve had this extreme tiredness forever.

I gave up mentioning the aches as the Gp ignored it so I was convinced I was complaining about nothing and being a cry baby. The aches have got worse in the last 6 months to the point where when I stand up, I have to do it so slowly as I’m stiff as a board. They tell me I need to excercise. Catch 22 as I can’t.

I have always wondered about fibromyalgia but thought I was being a hypocondriac- I’m not sure I entirely understand the definition of it. Can anyone help please?
If someone hits me, or somebody shakes my hand particularly hard, for example, I will be left feeling that sensation for about 10 minutes after. Is that a symptom?

What is a rheumatologist?

Thank you,

MMx

6

a rheumatologist investigates autoimmune diseases like lupus, fibromyalgia, and sometimes lyme too. have you mentioned to your drs. that you have had these symptoms since before MAV? i wonder why they (especially your gp) isn’t taking you seriously…I would find a new gp who is willing to investigate this.

7

Hi Miss Moss and others-

I’ve had a daily headache most of my adult life - at least since I was 20/21 (I’m now 36) and I had a migraine every day for 11 months. Since then I’ve had a daily headache and a migraine at least once every 6 weeks, often more. Sometimes the daily headaches have waned, but definitely for about 18 months before the big bang of MAV hit I remember going to the GP about the daily chronic headaches and the chronic fatigue because they were affecting my life so badly. Ironically, I was put on amitriptyline, but didn’t stay on it long (6 weeks) because it made me feel like even more of a zombie and I couldn’t function at work and as a mom. I didn’t (and still don’t) like going to the GP because I’m pretty sure they all think I’m a crazy hypochondriac. I saw Dr S on 25 Jan, which was great, but the travel to and fro has knocked me around so much. He’s brilliant and makes me feel not so crazy, it’ll be great to know that my GP will have his letter on file so at least I have something to back me up!

I’m so exhausted all the time. Like you and the others, I struggle just to get through the day on most days, and that’s after a good 10 hours sleep. I consider 9 pm a late night! Party animal! Maintaining a house and having any energy to keep up with a four year old is nearly impossible, but I just try to do the best I can and try not to let the guilt spiral get too bad.

I, too, have suffered from fatigue for a long time. When I went to the GP about it years ago when I was trying to get pregnant, I was told it was because I was depressed. I wasn’t, but he thought I should be because I had just moved from the UK from the US. Gotta love GP’s. I suffered from it in the US as well, but just assumed it was because I was studying/working too hard. Always seemed I needed more sleep than all my friends. The fatigue has definitely gotten MUCH worse since the MAV hit, but I don’t know if that’s the medicine or if it’s because I’m not able to work, so I’m not as busy so I notice it more, if that makes sense? As I can’t be on a computer for more than 30 minutes, watch TV or read for more than an hour, have no energy to clean/exercise/do much more for long periods of time, the day drags by. So I tend to notice the exhaustion quite a bit. But then I imagine those people that are working are even more exhausted because I can’t imagine trying to use my brain right now. As is probably obvious by this post. :smiley:

I have the aches, too, and I feel much to young. Dr S brought it up at my appointment, he said it’s part of MAV. I have bad aches on my left side, worse when lying down to the point that it wakes me up in the night because my entire left side feels almost like it’s gone numb. Never mentioned it to my GP, for the above reasons. By the end of most days, by whole body aches like I’ve been in a boxing ring with Ali even though I’ve only done light housework. I feel like it’s because I don’t move enough and I need to exercise more, but like you said, how do I do that exactly when I struggle to maintain balance to take a shower? Kind of hard to go to Zumba or something isn’t it? Walking my daughter to pre-school one day a week is difficult enough, and that’s only .7 miles each way. I look like a drunk and feel like crap when I get back. Yoga when you can’t balance is definitely out of the question!! What are we supposed to do?

Ugh. I for one am tired of this illness and really hope the drugs kick in really soon and we can feel like normal women someday soon!!

8

MM - I definitely think you should have the Lyme tests if you can. I have heard migraine can cause fatigue but I myself have had a problem with believing it could cause the severity of fatigue I have experienced but even if it does the aching and pains you describe don’t sound right. Especially if they are going worse. I have not heard/read much about migraine causing bodily aching like you describe. Maybe I’m wrong but it sounds like there is more to it than just migraine. Maybe you have migraine plus something else x

9

Oh Jsspill, I am so so sorry you have suffered these daily headaches, the horrendous fatigue and the body aches too. It truely is horrible. But it is nice to know, in a way, that there is someone else out there with the same diagnosis as me, suffering the same specific symptoms- it makes me feel less of a hypocondriac as the GP’s would have us believe for so long. :frowning:

I really do not know how anybody manages this condition whilst also looking after and raising children. I said the same thing to Anna31 when I met her, I really take my hat off to you guys and girls. I would love nothing more than a family of my own one day, and to be honest, it is one of the reasons why I am so desperate to get well now, but I just couldn’t comprehend going through pregnancy and then raising children alongside dealing with this condition. You guys are an inspiration.

I totally hear you on the excersise… I am going to push myself to try some wii fii tonight and see how terrible it makes me feel. :slight_smile:

Jem- I feel the same- I have a hard time believeing migraine can cause this fatigue and aches but then I was in awe when I joined this forum and read the survival guide and learned that so many things can be migraine, so I guess that anything is possible.

I am still trying to decide whether to go to the Breakspear or go straight to the doctor in Wales, but either way I am definately doing the testing. Eek!

Thank you ladies for your advice and input xxx

10

Hey!! I have daily severe fatigue and I generally feel so rough and ill. I get alot of pressure headaches but they are not daily, maybe 2 per week. Does ur achiness present like joint pain??? As that is quite lyme-esque…you can call David Owen and often chat to him direct…I’m not 100% sure he does testing, but I can report after my appt on 26th Feb. god bring on the days where all this is a distant memory! xxxx

11

Hi all, hello lovely mm :slight_smile:

Mm- I’m not sure if I mentioned to you last week but my body aches all the time too. I think I told you I’ve started having sports massage and it bloody hurts - some parts on my legs hurt so much that if the therapist does pressure point it can bring tears to my eyes! I know I always go on about the tingling but I really do now believe that it is happening because my muscles are so tight. I remember when the latest episode started (June 2012) I had been on the treadmill for about 30 minutes when I came off my legs were literally vibrating. I believe the muscles were very very tight and sore.
I also get that thing you mentioned about feeling things like a vibration I guess after touching something. An example of this is when I use my blender I switch it off and my hand can still feel it - as I write I am reading this allowed and seeing how wacky I sound!
Jjsspil - I’m so sorry for everything you are going through - ditto on the kids too, mine are 2 & 3 I have ended up in tears so often because I can’t cope with them because of this stupid condition.
Re the exercise - NH suggested yoga or Pilates, so I did a Pilates class on Monday I really enjoyed it , there was some balancing involved but I was fine and just held onto the wall!!! Of course I’m aching today but not in a bad way if that makes sense? It’s worth a try ?

Love to all my fellow dizzys!

Xx

12

Hey hey!

What do you mean by joint pain? Like, knees, and elbows ache? More like, I’m sat down for a bit, and I feel bruised. Then when I stand up, I have to sort of unfold myself slowly and it hurts. :confused:

‘Lyme-esque’… I like that word!!!

I’ve just written Dr Owen an email which he will probably take a long sigh over, has taken me 3 hours to write (ok, it’s not THAT long, but includes a summary of my whole history), and as I thought I need a history summary for the migraine clinic anyway, thought it worth it.

Will let you know what he says!

Anna!! I have wondered how you have been this week…
You and your vibrations!! That is very very strange.

Thank you for the advice on pilates- is it quite light and not requiring much muscle work as I am a weakling.

xx

13

I know the way that I go on about it makes it sound ‘interesting’ believe me I wish it was all GOOD VIBRATIONS!! :lol: I feel bruised too, if one of my kids steps on me (happens at least once a day) it bloody hurts then I bruise really easily to! X

14

Pilates was totally do- able even the overweight, aged looking, miserable wreck that I have become could manage it! Oh the weight that’s thanks to the nori! X

15

Be warned I e-mailed Owen and he never replied…he might tho if you’ve sent a proper history, I just wrote asking for an appointment. I get the buzzing too Anna, like I’m getting multiple electric shocks!!! xx

16

Sorry yes I meant joint pain like knees, elbows etc. xxx

17

Hi Miss Moss

I’ve had daily headaches for the past 40 years. I remember in my 20’s going to the Drs complaining of constant headaches ( I’m now 61 ) . The " Big Bang " vertigo didn’t happen until 6 years ago and since then 24/7 dizzy. Why then I’ve no idea.Why one night would I wake up so dizzy I would have to be taken to hospital by ambulance??
I’m constantly tired but that’s because I sleep badly and probably get about 5/6 hours of very interrupted sleep.
This whole MAV thing is a puzzle.
Anne x

18

Hi Anne,

That is a crazy long time to have daily headaches… ! That’s awful. Are you in the UK? Has any doctor ever listened to you and said, that is not right?

x

19

I have had headaches since I was a teenager. Have had progressively worsening generalized pain (fibromyalgia) and headaches for about 8 years. Started having mild to moderate dizziness about 6 years ago, 24/7 but tolerable. About that time developed significant fatigue. Doctor thought I was depressed and put me on an antidepressant. Didn’t help. A few months later another doctor found out that I had hypothyroid. If you have not had your thyroid checked recently, get it checked. It can also cause vertigo. I had my thyroid checked 2 years earlier when pain started and it was normal. So even if you’ve had it tested before might want to have it checked again if it’s been a while.

Debilitating dizziness started 3 months ago. Currently responding to verapamil, clonazepam and fluoxetine.

20

Hi Miss Moss

Yes I’m in the U.K. Have been to Doctors many times over last 40 years all to no avail. Now on 100 mg Topirimate which has definately helped the headaches and dizziness . I wonder though if the headaches had been sorted out sooner would I not have had the " Big Bang" and the next 6 years 24/7dizzyness. . Suppose no good worrying about spilt milk !
Anne x