So confused about what is wrong with me

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

So confused about what is wrong with me

Postby Mezzanin » Mon Apr 15, 2013 2:24 pm

Hi Posted on this forum about a month ago questioning whether I had Fibromyalgia.

I am still experiencing many of the same symptoms:

Pretty consistent burning feeling in soles of feet and palms of hands sometimes migrating to upper back. It is not extremely painful but it is really uncomfortable.

Can't sleep more then a few hours at a time (6 weeks now).

Right shoulder aches and so does jaw but controlled by Neurofen.

I saw a top fibromyalgia doc last Monday and he says I do not have Fibromyalgia as I do not have any tender point sensitivity whatsoever. Nor any other muscle skeletal pain. Nor sensitivity to sound or light. And although fatigued I don't suffer memory problems (fibro fog)

I just just found out I am perimenopausal but when I visited my GP today he thought I had Fibro (he does not know I saw this doctor as I paid privately).

I am so confused and so tired and really anxious. i just want to know what is wrong with me.

Could my symptoms be the start of Fibromyalgia?

Any advice is greatly appreciated.


Mezz x
Mezzanin
UKFM Member
 
Posts: 11
Joined: Sat Mar 16, 2013 7:05 am

Re: So confused about what is wrong with me

Postby zaralala » Mon Apr 15, 2013 2:40 pm

Mezz,
I would go back to your doctor and ask him to refer you to the rhumatology clinic and see what they say.
I had the symptoms for at least 15 years before I managed to get a diagnosis.
Its a hard slog.
Sxx
zaralala
UKFM Member
 
Posts: 19
Joined: Wed Oct 17, 2012 1:41 pm

Re: So confused about what is wrong with me

Postby Mezzanin » Mon Apr 15, 2013 2:49 pm

But I already saw one (the fibromyalgia specialist) and he said I didn't have it. He is the top man at Guys hospital. He thought I had anxiety.
I have no widespread pain or tender point pain only burning and sleep problems.
This is what is doing my head in. No diagnosis seems to fit me.
Mezzanin
UKFM Member
 
Posts: 11
Joined: Sat Mar 16, 2013 7:05 am

Re: So confused about what is wrong with me

Postby Pipsie » Mon Apr 15, 2013 2:52 pm

One does not have to have all of the symptoms of fibro for it to be fibro, though your lack of tender points do suggest that it fibro. I think it could well be some kind of Chronic Fatigue Syndrome as there are a few out there with similar symptoms, I would talk to your GP regarding the possibility of CFS, ME, etc and also Temporalmandibular Syndrome for you jaw aches https://en.wikipedia.org/wiki/Temporoma ... t_disorder), I am have read it can often accompany CFS etc. It gives one jaw ache, headaches in the temple region, and- I think- can cause shoulder aches.
I have been on many hormones to know how horrible all this menopause stuff is. Look up some herbs/teas/yoga that will help relieve the symptoms. I also find a mild nonchalance towards things helps with the hormone induced mood swings. Eat very well at the minute avoid junk, sugar, salt, and processed foods like the plague until you feel a bit better
Other than the practical, try not to worry too much. If bloods etc are coming back as okay there is nothing dangerously wrong so take heart in that. It takes the medical profession a bloody long time to do anything, especially in the NHS. Make sure you are warm, not tiring yourself out, importantly don't get angry that your body is being different, and be nice to yourself; Good long soaks in the tub, pamperings, . If you do not have any prescription analgesics, I strong advise you get some from your GP, and may be even a short course of sleeping pills to get you back into the natural rhythm of sleep it will help loads to get a good night's kip. -Shoul make you feel a much better, and I really hope that is soon.
Keep your chin up, and remember we all have your back if you need support or some love :)
TTFN xXx
Pipsie
UKFM Member
 
Posts: 28
Joined: Sat Jan 12, 2013 1:12 pm

Re: So confused about what is wrong with me

Postby Mezzanin » Mon Apr 15, 2013 3:06 pm

Thank you for your response, it is nice to get feedback. My doctor looked so angry this morning, I felt rubbish.
I don't think it is CFS/ME. I am not fatigued to the point of lack of energy. I can walk for hours. I don't feel my normal energetic self to be sure but I am not unable to do physical things.
I just feel really really anxious, slightly depressed, and groggy. So fed up with not sleeping and this burning pain.

Wondering if my symptoms are perimenopause and anxiety.
Mezzanin
UKFM Member
 
Posts: 11
Joined: Sat Mar 16, 2013 7:05 am

Re: So confused about what is wrong with me

Postby Pipsie » Mon Apr 15, 2013 7:12 pm

Your first stop should be GP and something to sort your sleep, in that case. It will help with so much.
Good luck! :) x
Pipsie
UKFM Member
 
Posts: 28
Joined: Sat Jan 12, 2013 1:12 pm

Re: So confused about what is wrong with me

Postby denys » Mon Apr 15, 2013 11:47 pm

Go back to see your GP and tell him you paid privately to see the Consultant, did you get a report :?: :?: :?: :?: if not could you request one (maybe if you give your doc his name he can do that) being able to walk for hours is not usual in people with FM BUT that said we are all different and some manage to hold down very physical jobs as they are able to push through the pain where others are bed bound so :dunno: :dunno: :dunno: :dunno: :dunno: :dunno: :dunno:
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: So confused about what is wrong with me

Postby Mezzanin » Tue Apr 16, 2013 4:52 am

denys wrote:Go back to see your GP and tell him you paid privately to see the Consultant, did you get a report :?: :?: :?: :?: if not could you request one (maybe if you give your doc his name he can do that) being able to walk for hours is not usual in people with FM BUT that said we are all different and some manage to hold down very physical jobs as they are able to push through the pain where others are bed bound so :dunno: :dunno: :dunno: :dunno: :dunno: :dunno: :dunno:


Hi Deny
I am not sure what you mean? How will telling my doctor help? The fibro specialist does not think I have FM the doctor (GP) thinks it is a possibility but he didn't seem to know much about FMS or anything actually. All I keep hearing from everybody is I am anxious.
Do you think there is a possibility I have FMS then? This is what I am confused about. I only have the burning symptom which is not painful just annoying (hurts more if I walk) but then can randomly appear when I am resting. If I wriggle my feet it goes.
And I have the palm burning.
Nothing else except an intermittent aching shoulder and jaw. Which most of the day is absent. I don't wake up stiff.

The sleep problems too.

All of which are partial symptoms of FMS, Lyme, Lupus, MS, anxiety and perimenopause.
Mezzanin
UKFM Member
 
Posts: 11
Joined: Sat Mar 16, 2013 7:05 am

Re: So confused about what is wrong with me

Postby denys » Tue Apr 16, 2013 1:35 pm

If you tell your GP you went to see a FM specialist because it had been mentioned and you wanted to know whether it was or not, your doc can then either refer you again or get a report from the specialist. If the GP isnt that clued up on FM then he should take the word of someone who is more experienced.

If this specialist is the top man, then why would your GP doubt his word and maybe they can move forward and look at other conditions that may be the problem.

I hope you get some answers soon and any confusion is cleared up
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: So confused about what is wrong with me

Postby Mezzanin » Tue Apr 16, 2013 3:23 pm

Thanks Denys For taking the time to reply.
Mezz x
Mezzanin
UKFM Member
 
Posts: 11
Joined: Sat Mar 16, 2013 7:05 am

Re: So confused about what is wrong with me

Postby whoami » Tue Apr 16, 2013 7:58 pm

Mezzanin, I would think you have something other than fibro going on. I was lucky to be diagnosed by a specialist who has fibro himself. You must have a minimum of 11 of the 18 tender points to be diagnosed with fibro and since you have none I would suggest the specialist is correct.

Has your GP ran any blood work to rule out other conditions. A simple blood test would confirm pre menopausal. I started it when I was 35 all done and over at 40, great! LOL. A lot of symptoms that are the same for fibro are menopause.

Also, have your Dr check your thyroid levels. Again, a lot of the symptoms are the same.

I hope you find an answer soon and get relief no matter what it is.
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: So confused about what is wrong with me

Postby Mezzanin » Tue Apr 16, 2013 10:37 pm

Thank you Woam
I have had my thyroid, B12 and blood sugars levels tested. All fine
I am in peri menopause apparently. Had blood done last week and results came in yesterday.
Mezzanin
UKFM Member
 
Posts: 11
Joined: Sat Mar 16, 2013 7:05 am

Re: So confused about what is wrong with me

Postby sweetie pie » Wed Apr 17, 2013 1:17 am

hope you find out what you have X
sweetie pie
UKFM Member
 
Posts: 113
Joined: Fri Mar 22, 2013 2:14 am

Re: So confused about what is wrong with me

Postby lolo73 » Wed Apr 17, 2013 9:34 pm

If this specialist says it is not FMS then assume he is right and look for another cause. The menopause can cause loads of problems, some women go through it and hardly notice and then other women go to hell in a handcart. Your GP suspects it could be FMS but doesn't know until a specialist makes the diagnosis, you have bypassed your GP and got the answer straight from a top specialist, your GP doesn't know this so is still considering FMS. For your own benefit you should tell your GP so he can help you by investigating you for other causes rather than wasting your time investigating you for something you have already had ruled out by the specialist. Good luck finding an answer x
lolo73
UKFM Member
 
Posts: 156
Joined: Tue Dec 18, 2012 8:49 pm

Re: So confused about what is wrong with me

Postby whoami » Thu Apr 18, 2013 11:09 am

Mezzanin, glad your blood work came back with an answer. Is your Dr putting you on hormone replacement tablets? They worked for me with the only real symptom I had which was perspiring all day long, very heavily.

I think every new symptom should be checked by a Dr. I have had a stroke, bleeding gall bladder, bells palsy and cancer, all that I thought was just the fibro....until I went to the Dr.

Lets hope that you get through this quickly. Peace to your heart!
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Next

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 12 guests