Status
Not open for further replies.

jjones2908

New member
Joined
Mar 12, 2014
Messages
2
Reason
Other
Diagnosis
00/0000
Country
UK
State
London
Hello all,

I am a 29 year old MALE and new to this site and this is my first post. In fact, I have hovered around various forums for the last 3 years or so without ever posting anything but I have finally decided to break my silence.

I am not expecting someone to be able to tell me if I have the condition or not, but I am hoping that someone who either suffers with the condition or knows a good deal about it (or similar/related conditions) may be able to at least say, "yes that sounds familiar" (or not) and therefore help me decide whether to bother to pursue this line of enquiry with my doctor. I am well aware that doctors tend to switch off if they detect self-diagnosis so I would of course approach it carefully.

So I will try to keep this as concise as humanly possible and will order it by date, including episodes, tests, treatments etc. and anything else that happened around the same time which might be significant.

If you can't be bothered to read all of this (which I would totally understand!) please just skip to the current symptoms part at the bottom - under the line of bold writing)

>Dec 2010: trip to Poland (pretty cold, -10 deg C). I was aware of itching around my stomach with no rash and I seemed to be pretty tired a lot of the time. This seemed to subside and I began to forget about it. I mention this because I believe it's the first time I remember feeling anything unusual, even if it didn't affect my life too greatly.

>Feb-May/June 2011: after a session at the gym one evening I noticed that I had itching and prickling sensations all over my limbs and this would carry on for about 3 days (no sign of a rash). This is where things first really kicked off and for the next 3 months I was massively tired each day after being at work (office job). I would get home and try to eat dinner and then I'd just have to go to bed. Along with this, I was getting a tingling in my left foot which I couldn't seem to shake off. Slightly perplexed by these strange symptoms, I went to the doctor and had the normal set of blood tests done: liver, thyroid, glucose, inflammation, etc. My tests came back perfectly and it was put down to stress or anxiety. Well, 3 months of those symptoms definitely made me anxious. Anyway, they seemed to die down by May/June time and I carried on with life as normal (I even went travelling for 3 months).

>April 2012: after a mystery "virus" causing massive nausea for 3 weeks (no matter how hard I tried, I couldn't vomit) I felt that not all was right with me. I woke up one morning towards the end of the illness and had to crawl across the floor because my balance was so bad. This improved ever so slightly, but I began to have severe dizziness and nausea episodes at work out of absolutely nowhere and at one point I was told to go to A&E to get myself looked over. The doctor brushed me off and said I probably just had a virus. I then went and visited a second doctor who game me some antibiotics as they said it could be some kind of inner ear infection. Anyway, the medication did nothing and to this day, my balance has never returned to normal, although it does improve slightly from time to time.

>May/June 2012: during one day at work, I could feel a strange stiffness going through my right arm and it seemed to be getting worse and worse. By the time I got home, I was having to keep my hand closed because it seemed to ease the pain and stiffness slightly. I decided to have a bath to see if some warm water might help to loosen everything up a bit, but I noticed that the sensation of water touching my arm
was causing a strange electric type nerve pain up my arm which definitely alarmed me slightly. I also had some itching and stinging on the skin, again with no rash. I went to the doctor who did some strength and reflex tests but couldn't conclude anything and suggested I just try some strong pain killers. To this day, this has never properly gone away and my right arm and hand are generally uncomfortable most of the time now. The sensation that I get actually causes me nausea and I've never been sure of why this is. Interestingly, this flared up again recently but I will go into that later.

A few days after the arm situation began, I was walking with my partner when suddenly my right leg became what I considered to be "weak" and I ended up having to limp back to the car. I couldn't work out what it was, but I described it to my partner as feeling like my legs muscles weren't doing what I wanted them to do. I still limp on my right leg to this day and it appears to have caused some issues in my right foot (some numbness in the toes).

Another symptom that started up around the same time as this was manically twitching muscles all over and I found this twitching to be either spontaneous or reactive to something like me stretching a limb. Fortunately this died down a month or so later as it could be embarrassing (sometimes a whole finger would twitch involuntarily) but has since returned (see below). I've read that this could be B.F.S (benign fasciculation syndrome) and people have reported other sensory issues that go hand in hand with this.

>Dec 2012: Jan 2013: balance rehabilitation therapy with ENT with little success.

>April 2013: After visiting the doctors a few times complaining of the above symptoms, I was referred for a full spinal MRI so they could check for de-myelination or any other issues with by nerves, muscles or bones. Nothing came up apart from some bulging discs in my neck. Mostly relieving but slightly frustrating.

>2013 (throughout): various episodes of sore/tender skin with no rash (the type you get when you have the flu) - mainly ribs, inside of arms and back of head/neck

>Nov 2013 - present day: In November I had what appeared to be Gastroenteritis and this hit me pretty hard. On the first day of having it I somehow managed to have a seizure but fortunately my partner was in the next room and came and found me. Anyway, after a week, the G/E seemed to clear up and I thought everything was going back to normal. How wrong I was. I spent most of December feeling completely nauseated, to the point of being unbearable, dizzy, fatigued and pale in the face with dark rings under my eyes (I have NEVER had this for more than a few days before). Once the nausea started to die down in January, all of the symptoms that I am now experiencing started up again.

>Dec 2013: All manner of blood tests (more than I can currently remember) including liver, autoimmune profile, inflammation, 3 month glucose, glucose, hepatitis, iron, b12. All came back normal. Again, good, but also a bit frustrating.

>Feb 2014: Prescribed Neurontin - all well and good to mask some of the issues but I'd ideally like to try to find out what is going on.

I thought that perhaps the above would give some background on how I've come to where I am now, especially as I am suspicious of the timing of my symptoms (i.e. they seem to get worse after illnesses). When I think about it, I think that I probably experienced a few of the symptoms before December 2010 but I probably didn't really acknowledge them as being strange. For instance, I think I had a few episodes of sore skin as far back as 10 years ago.

Below I've made a summary of everything that I am currently experiencing (and have been for around 6-8 weeks now):

-Tender/burning (sometimes itching) skin sensations without rash: back of head and neck, temples (usually in combination with headache), chest/ribs, stomach, insides and backs of arms, fingers, insides of legs, groin and sides of feet. Most of the time it hurts to have my clothes rubbing my skin - especially around my ribs and fronts of my legs.

-Particularly severe burning/stinging and sharp pains in feet and sometimes hands/fingers

-Swelling/bruised spots (no visual indication): nipple area, armpits towards backs of arms - painful to press

-Pulled muscle sensation and/or feeling of swelling in area (often accompanied by sore skin as per first bullet point) after no exertion: mainly armpits and groin

-Severe joint aches: seems to have no relation to activity and mainly involves groin and inside of knees

-Severe upper body muscle aches - no relation to exertion

-Dull to sharp lower back pain on right side (could just be a normal back issue)

-Sharp/throbbing pains in wrists, fingers / finger joints and sometimes glands behind jaw

-Frequent nausea and stomach upset

-Frequent stabbing headaches in one temple or one side of forehead

-Chronic poor balance seemingly made worse by head movement (or lack of)

-Severe lightheadedness/head rushes when getting up from lying position

-Sudden dislike or crowds and closed in spaces (was never a problem before)

-Generally unhealthy complexion: dark lines under eyes, flushing, red spots and blotching and paleness

-Definite correlation between how I feel and changes in routine, sleep, diet (?), ambient temperature and emotional stress - seems to upset body entirely and set off problems again - i.e. why do I always seem to get a temporary "illness" (usually terrible nausea) when I have to get up at strange hours for flights to go on holiday?

-Massive problems finding the energy to get up in the morning

-A general sleepy/fuzzy-headed feeling (worsened vision) all through the day which limits activity - sometimes I feel tired to the point of feeling daunted and nauseated at certain points in the day (can even be first thing in the morning)

And to top all of this off, it's making me miserable now. I know that "something" is going on, I just don't know what.

I can see this has turned into a bit of an essay, so thank you so much if you've managed to get to the end of this. If anyone could give their thoughts, anything at all, I'd be really grateful.

Cheers,

Jeremy
 
So sorry to hear that you suffer from all of this. Some of things you mention sound familiar. It sounds like you do have fibromyalgia and also panick attack and anxiety problems. Also rosacea, ie. the red blotches on your skin. I think you also suffer from other disorders as well, but I cannot say because I am not a Dr. But yes, I do recognize that joint and muscle pain, hand, finger and wrist, stabbing headache pain, stomach upset, and nausea, pain etc. I think the best thing for you to do would be to deal with each symptom, one at a time. I think you may need a lot of different specialists opinions. If your doctor is willing to send you on a mission to find out what is going on this may be the best thing to do. I wish I could help more. Keep hanging in there.
 
Hi Daleo, thank you so much for replying to my post, it's really appreciated.

Having felt so lost and pretty clueless over the last 18 months, it's actually quite a relief to hear someone that deals with the condition say that some of the things I list sound familiar. I'm certainly not diagnosing myself though. I just know that I've been feeling "off" for quite a long time now - something just isn't right. Of course you list all of these symptoms with the doctor and they look at you like you're crazy, so I think you're right in saying that I should treat each thing separately. Perhaps at the end of the day, my doctor will put it all together himself and make suggestions for referrals. I guess the only thing that concerns me is delaying properly treating or managing whatever this and if there might be any benefit in pushing to see a Rheumatologist.

Thank you for the suggestion about Rosacea, I will definitely look into that. I would also agree about the anxiety. Throughout my 20s, I have changed as a person, far less relaxed than I was, more of a worrier. I have read that emotional stress can make all of this worse, so perhaps these things have gone hand in hand.

I have a close work colleague who was diagnosed with M.E 15 years ago (realise this is a different beast) and we've had a few chats now. She initially asked me to tell her what symptoms I experience and she did say that some of what I was saying sounded strikingly familiar to her. The difference between our symptoms, though, is that I suffer a lot more "sensory" stuff than her, but she has crippling fatigue. Again, I'm not diagnosing myself (the thought of having something like M.E scares the pants off me), but it is interesting to hear these things.

Thank you again.
 
I don't want to make you feel bad or anything, but I really think your doctor is awful. You should be seeing a good neurologist, because a lot of your symptoms sound more like neurological symptoms to me. I have also had that skin tenderness sensation, but some of the things you mentioned sound nothing like fibro... specially your personality changes! You should go see a neurologist and get a MRI asap. You never know!

You should see wary of the nausea as well, I started getting some really bad nausea episodes before being diagnosed with a hiatal hernia. All your symptoms could be caused by something else, not only fibro.
 
I have experienced much of that, and found out that it isn't all fibro. My joint achiness, burning, and swelling are inflammation. I got rid of most of the symptoms through diet and suppliments (9 tumeric pills a day and a lot more.) You should definitly try an anti-inflammitory diet, which should involve going totally organic and sugar, grain, dairy, and alcohol free.

Don't be afraid to ask your doctor to do the tender point test. It shouldn't be insulting ask, and any information is helpful.
 
Jeremy,
Your symptoms sound to me more neurological and I wondered have you seen a neurologist? also you mentioned having a full mri of your spine, but did they do one of your brain? Neurontin is a very good medication to be on since you had a seizure, as in addition to helping with pain, it is also used to control seizure activity.

Some of your symptoms are suggestive of fibro, but many are not as they sound much more severe. See if you can get a mri of your brain as often the tell-tailed signs of MS are hidden there. Also find a good neurologist and rule out other more serious nerve and muscle diseases. If all is well then see a rheumatologist. Again there may be other reasons for your illness, and all must be ruled out before a diagnosis of fibro can be considered. Oh, keep a journal of your health problems for your own record, but include your partner as a witness to your many symptoms, as well as, talking with the doctors. I wish you the best of luck.

Keep coming here and read the posts and join in by posting. We will try to help by supporting you with kind words and advice, as you search for answers. :)
 
I am so sorry for your pain, despite of what your going through you will need to have the faith that you will get better.
Make sure that you visit several doctors and specialists, as your doctor may not know what all the conditions you truly have if he is guessing them out. You might want to deal with each symptom separately because you don't want to be stuck with taking a lot of medications, vise versa treatments. But you can naturally take care of yourself by juicing fruits and vegetables that is the ultimate natural cure. Google how to get rid of fibro by juicing fruits and vegetables.
 
I hope you push the doctors for a brain scan and more thorough testing. Some of your symptoms sound a lot like what one of my friends experienced before she was diagnosed with MS.
 
There is only one way to find out! Right now, none of us can tell for sure. Some of the symptoms may appear in other diseases as well.
 
I think if we could just "get rid of fibro" through juicing, we would all be jumping on that band wagon. I eat 8-10 fruits and veg everyday and have for most of my life and it hasn't made a stitch of difference..except of course in bloodwork (vits, cholesterol)
 
I'm sorry you're going through this. I recommend you see a rheumatologist if for no other reason than ruling things out. Ask for a COMPLETE work up and don't take no for an answer. My rheumy (the sixth doctor I saw) ruled out RA, Lupus, Sjogrens, etc before moving on to the fibro diagnosis. Just knowing what's causing your symptoms can help. Stay strong!
 
Hello Jeremy... I see that it's been two months now since you posted. I'm sorry I didn't see this thread the first time around or I would have welcomed you to the forum. :)

So what's the latest on this? Have you seen other doctors and have you had further testing done? If so, have you found your answers, and how are are you doing now?
 
I found out by having an eye examine, and I happened to mention that I was having headaches more often. The eye doctor wanted me to see an eye specialist. i went to see a specialist, and, the doctor found out by consulting for 3 hours with other doctors, that my migraine headaches along with finding out I had whiplashes, and other surgeries, that all those symptoms were related to Fibromyalgia.
 
I think it's possible you could have Fibromyalgia. it can cause different symptoms on some individuals. A few of your symptoms sound like what I had when the doctor thought I could have MS, but i didn't have it. I did have a mini stroke though. I would suggest if you have insurance to think about seeing a neurologist that can at least rule out a few things.. Just talk to your physician and see what he/she tells you when you suggest a neurologist. It could be you just need a overall checkup with blood work done on you. These suggestions are just things to make you think, and then discuss it over with your doctor for further evaluation.
 
It sounds like fibromyalgia and could also be symptoms of MS but you really need to see a specialist about it. I'm sure others have recommended (and this will be redundant) a neurologist, rheumatologist and taking a look into pain clinics would be a good idea as well as working with your general GP.
 
Status
Not open for further replies.
Back
Top