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Some Help & Advice
4 Replies
Irishboy - September 3

Hey everyone,

First of all I want to say that this is a really great site you have here! I have a few questions that I was hoping some of you can help me with.

Im a 22 year old guy who has been suffering with some really unusual symptoms for the last few years. When I was 19, one day I got really bad aches and pains, in conjunciton with muscle twitches, all over my body. I didnt take too much notice but after a few weeks it still hadnt cleared up so I went to my local Doctor. He wasnt particularly helpful but he did loads of blood tests, all came back clear.

Anyway it sort of cleared up then after another month or so. I assumed it was just a weird virus or something. Then, about 4 months later the aches and pains returned. A good bit worse this time. Also this time I got fairly severe pain along with it. For instance the backs of my legs were sore and tender, it was uncomfortable to sit in one spot and the base of my spine felt very sore. In addition I got a really unusual sensation in my jaw. It was painful and uncomfortable, the only way I can describe it is the feeling that my jaw was too big for my face!

Around this time I also developed a curious kind of lightheadedness, almost like i was constantly slightly drunk. All this lasted or nearly four months. I became really scared that I had MS. I saw four doctors, all of whom dismissed that idea saying that it isnt how MS presents. I also had no problems with balance or movement or anything. The thing that worried me most though was every morning when I woke up during this time, one of my hands (it varied) or some of my fingers would be kind of numb and clenched. When I moved it the feeling came back but it was pretty scary.

Anyway I eventually got to see a neuro who did lots of tests and really talked me through everything. He also didnt think it was MS. He acknowledged that he was really my last port of call and was very kind and understanding. He did not believe an MRI was justified.

Anyway I subsequently went to quite a well known herbalist (he is also an MD) and he said it was FM. He put me on a course of herbs and it cleared up. For nearly two years in fact!

These past few weeks though Ive had a return of the main symptoms, mainly aches and pains. But I also have the nighttime numbness back in my hands and fingers. Its quite frightening and Im wondering if anyone else has this? My fingers feel kind of tingly throughout the day. If I held my hand up for too long (in class or whatever) the feeling would kind of drain from it and it would go tingly. Should I still be worried about MS?

I'm really sorry for the length of this, I just thought it would be useful to be quite specific! I am particularly concerned about the numbness when I wake up. Is that normal? Also is this kind of relapsing/remitting situation typical?

Thanks so much for reading, any feedback really would be appreciated.

Thanks again,



Suki 2 - September 23

l have a lot of numbness and tingling in hands, arms, feet and lower jaw. It comes and goes and when I'm tired or have done a lot with my arms or walking it's worse. I've tested negative for MS. That's how the whole FM came about -- they thought I had MS or a stroke. My rheumatologist has a great suggestion -- don't place a value judgement on your d
symptoms, just notice them and be okay with it. Even joke about it if you can. Ex: I tease that now I can take cool showers because I don't really feel the water temp. I stutter and loose words when I'm tired and one dr was worried it was stroke or brain tumor, and rheum said "you mean ffffibromyalgia?" FYI my rheum is one of the drs who was on the panel that originally identified and classified FM as a real disease. Wish you all the best -- try to keep your curiosity hat on and practice just noticing symptoms ("oh,okay, so this is what's happening now." I've had 3 confirmed diagnoses and am still having trouble accepting this is real! I feel for you -- hang in there and eliminate as much toxicity (naysayers, negative people, bad relationships, things that bring you down as best you can). Seek out those who are supportive and positive. Don't let people pity you. Keep reminding everyone you're not an invalid. Live in the be. Be well.


islandguy - September 23

Suki2.. what a great post and good advise for irishboy.
I love your advice quoted: (Seek out those who are supportive and positive).
We should all remember that. It is one of the best medicines.


Robin1237 - September 23

Sean, I responded to your post already -- it's the first one you did, about 10 lower than this one. Please read!

Suki2 -- you too -- I think we have Lyme disease, a bacterial infection generally acquired through the bite of an infected tick, but can also come from other insect bites, plus human transmission. The spiral Lyme bacteria go for our nerves and soft tissues. This can cause all kinds of nerve symptoms, including numbness and tingling. Re effect on our speech -- the Lyme bacteria are in our brain too -- this is called neuroLyme. We have a bacterial infection and we need to be treated for it. Go read at The folks there can help you get educated and find a Lyme-treating doctor.


linda brown - September 25

i have the tingling and numbness too, if i hold the telephone they go numb. and when i'm in bed. there's a lot of pain with fm, so good luck/ have the jaw thing too, ever heard of TMJ



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