Hi i am new here, advice needed please.

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New Member

Date Joined Jul 2012
Total Posts : 8
   Posted 4/19/2014 12:04 AM (GMT -6)   
Hi everyone, I hope today finds you well.

I was wondering if people could give me a little advice on what I am experiencing.
I will write a list of things I am currently suffering with and hopefully someone can advise on my best course of action.

1. Numbness and tingling: thighs, arms, shoulder, back of head, feet, groin, buttocks.

2. Burning sensation: as above. Mostly at night in bed. Mostly after laying on affected part for 20 seconds but can happen instantly.

3. Gritty feeling eyes.

4. Floaters in eyes, usually black in colour but occasionally a pinky purple colour.

5. Migraines, at least 5 a month accompanied by vomiting.

6. Pain in upper arms, thighs, shoulders and lower legs (calf muscle).

7. Tired, achy legs. Especially after standing in one position for 2 minutes or more. Usually followed by the burning feeling listed at no.2

8. Clumsiness. I frequently walk into door frames, cupboards, sofa, anything that happens to be where I am,

9. Pain when walking. Sometimes I secretly wish I had a wheelchair or a walking aid I could sit on as the pain gets so intense.

10. Insomnia. Severe insomnia. Its 5.44am and I cant sleep and haven't been able to for 3 days now.

11a. Forgetfulness: I frequently cannot remember the name of things/people/places.
11b. I frequently forget what I am doing or saying.

12. Falling over or stumbling often. I have had random strangers accuse me of being drunk in the morning.

13. Muscle wastage in my legs and arms (dx'd by a Doctor)

14a. Unable to tolerate sunlight. (we don't get much where I live but when we do I live outside in the garden because the heat helps with the pain but it makes my eyes water and my head hurt and I have to wear the darkest sunglasses with a very high uv protection)

14b. Unable to tolerate artificial lighting in the house. Especially in the morning and in the eveing. Even the light from the tv hurts.

15. Twitching in my legs, arms at night. Very annoying!

16. Pain in chest in the centre of my rib cage.

17. Dizziness. I often feel as though I am on a ship and I am convinced I must be swaying. Husband says I am not.

18. This is a strange one. sometimes in the evening, whilst sat on the sofa with my husband or whilst laid in bed, I will ask him to stop "jigging about" as it feels as though the sofa or the bed is vibrating. He will tell me he is not moving but I swear the bed or sofa is moving. Almost like someone is using a jack hammer under the sofa or bed. I have thought at times we are having an earthquake but nobody else seems to feel it.

19. Trouble urinating. As in it wont come out. I can be bursting for the toilet but when I get there nothing happens unless I bend right over so that my chin is on my knees. Only then can I pass water.

20. Feeling like nobody loves me, like I am completely on my own. (I do have some issues with my family, too long to go into but long story short, I have not spoken to my parents in two years).

21. One minute I have a normal sex drive and the next I cant stand the thought of it. I have also noticed I am somewhat dry down below.

22. Frequent trouble with opening my bowels. I just went 11 days without doing so despite feeling like I needed to. In the end I took a laxative.

So that is my list.

I am 36 years old, very happily married with a 16 year old Son, a 14 year old Daughter and a 12 year old Daughter, I used to foster babies but I became too ill and had to stop.
Previously diagnosed with Fibromyalgia in 2008/2009.

When I showed my Doctor the list, he told me that it is "just Fibro".

Is he right do you think? He flat out refused to refer me to see anyone else. There are other Doctors in my practise but they take one look at my notes and say the same thing. "it's just Fibro".

The thing I am most concerned about is the burning numbness thing. It can be very painful but mostly it is very very very annoying as when I do manage to sleep, it wakes me every ten minutes all through the night.

Any advice would be very appreciated.
Thank you for taking the time to read this and I wish you all a pain free, healthy day.


Bad Mojo
Regular Member

Date Joined Aug 2010
Total Posts : 70
   Posted 4/19/2014 12:33 AM (GMT -6)   
I know nothing about Fibro so maybe those symptoms are common to it. Have they ruled out MS?

I share many of your symptoms. I used to have an aversion to light but it went away about 3 months after the relapse that caused it. I too have constant dizziness--much like vertigo because I feel much less dizzy when I am lying flat or at least at a 45 degree incline. The dizziness makes me very clumsy and I too look drunk when I walk--especially on uneven surfaces. I have full body numbness and tingling all the time. I also have the burning sensation on the right side if my dace and down my right arm--it is also constant. Luckily, I don't get many headaches nor muscle pain but my leg and arm muscles almost always feel fatigued--like I just got done with a very intense weight lifting workout. I have insomnia too--but I always have--I don't think it is associated with my MS. I have vision issues, but not the same as yours. I am very forgetful too and sometimes have trouble speaking. I often feel vibrations in my leg. Sometimes I think my cell phone is vibrating in my pocket but it isn't. I get the same sensation on my right foot sometimes.

What kind of treatment do they have you on? There are medications that treat many of your symptoms; Neurontin for the burning/pain, Ampyra to help walking, and there are all kinds of sleep aids (I found Ambien to be most effective). I used to take them all but they never helped me so I quit them all except Ambien. I take Tysabri to slow the MS progression.

Try to exercise. I know it is hard. If you have access to water I suggest swimming. The water keeps my body temperature down and it seems to lessen the burning sensation too. Whatever you do, keep moving.

Also eat healthy. I suggest trying to reduce the amount of processed foods you eat. Limit salt and sugar consumption.

Good luck!

New Member

Date Joined Jul 2012
Total Posts : 8
   Posted 4/19/2014 7:57 AM (GMT -6)   
Hi and thank you for replying.
I currently use Fentanyl patches for my Fibro pain and all the associated bits that come with it. So because of that, I am limited in what else I can take. According to my pain Doctor, the only thing I can take with it is ibuprofen. I may as well eat sweeties!

M.S was mentioned initially by my own Doctor but then my pain Doctor diagnosed me with Fibromyalgia and that was it.

I cannot go swimming as I have serious issues with maintaining my body temperature. If I get cold, even just a chill, I remain cold for the entire day. To the point where my skin goes blue.

Also, I rarely eat processed food as I find it upsets my Fibro, so any meals are made from scratch with fresh ingredients. The only problem is that the Fentanyl affects my appetite so I barely eat anything. Which explains why I only weigh 91 pounds at five feet five inches.

Thank you again for replying and I hope you are well today.

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 4/19/2014 10:23 AM (GMT -6)   
You need to get a second opinion. You have many disturbing symptoms. Some of them indeed could be MS. You have other symptoms that are not typical for MS.

The difficulty maintaining body temp could be raynauds. Have you tried a heated indoor pool?

Light sensitivity can be a symptom of lupus. You also have symptoms that can be attributed to Lyme disease.

Of course, we can't diagnose you. We will support you while you search for answers. Please keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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