Is this fibro?

Hey all

recently diagnosed with fibro but skeptical. no tenderpoints and am male. start of year i had muscle cramps on right hand side. then lightheadedness and tinnitus that went away, both starting around may. then 2 moths ago mind numbing fatigue - weighed myself around that time and has lost 15 kilos in 4 months without change of diet or exercise level. then started to have muscle symptoms, including loss of strength in hands and feet.

Neuro tells me it's not clinical weakness but i was very strong without much effort previously - looked after my sick ex g/f for about 6 years, which involved lifting and massaging for extended periods. Have had hands and feet checked by physios who say i have no nerve impingements. Hand specialist says my hands are weaker than they would expect in 30 year old. had emg and nerve conduction study (only in right hand and leg) which came back negative.

Very worried as physio tested e 2 weeks ago with a hand strength device - 40 and 35 for right and left hand respectively. This week it was 32 and 27 and both hands were shaking. Told neuro this but because I can still operate hands a bit he disagrees. Having trouble writing and typing this is a chore.

I don't usually get much in the way of pain. Are these symptoms of fibro?

Cheers,
Rob

Hey Maggie,

Thank you so much for your reply. I thought it might be arthritis, specifically Rheumatoid Arthritis, but my ANA, ENA and Rheumatoid Factor came back negative, and on examination and palpitation I've been told my joints are fine. Also got an MRI of my hands which I have been told should have shown something if it was arthritis or if I had bone loss. Very frustrating :(

My hands and feet feel... the only way I can explain it is 'soft'. They used to feel 'hard' and 'strong'. When all this started happening I had an inkling it would get worse so I started trying to lift things (as you do, when you want to test your strength). Don't worry - I don't do it every day and I only do it once or twice when I do just to see if I can lift whatever, not to exhaustion. The best example is this Ikea wooden shelf for my desk with a metal bar on it's underside I have laying up against my wall in my room - basically a piece of wood with a bar underneath. The darned screws broke for it (and of course Ikea has stopped making the ones in the size I need) so it's near useless. The shelf is not light but it's certainly not extremely heavy. Before this started happening I'd move it around if it got in my way or I was searching for something, grasping it between thumb and fingers by the shorter end to move it. Used to be easy. Cannot do this now as my grip strength has diminished. Same with writing with a pen - much harder now. Using chopsticks. Squeezing a tube of toothpaste - that was one of the first things I noticed. Can't do that with my left hand, when I try my hand shakes and if I try 100x harder I can sort of, maybe, do it slightly.

Unfortunately, these things are hard to quantify for the 3 neuros I've seen. They have their little neuro tests that a 3 year old child could pass (grip, push away, lift your arms up, blah) but my issue is not immediate weakness, but progressive weakness. The last one asked me what I was worried about - I said anything to do with muscle problems. He asked me: 'Motor neuron disease?'

I said, which turned out to be a huge mistake, 'Well, yeah, I mean that sort of thing causes issues with muscles and it'd be a pretty devastating condition to have.' Well.. then he turned on the smarm. 'Oh, I meet people like you all the time, you worry about nothing, probably all in your head, your twitches are most likely benign.' I showed him an old picture of my hands and one of me from the start of the year where I weigh more and have more muscle. 'This guy here in the photo - I'm so glad you showed me this - this guy looks sick to me. Right now you look well muscled and fit.' I've been unable to do exercise for the past 3 or 4 months, although I try, so I'm unsure how I could look 'well muscled'. That guy in the photo he said was sick was 98 kgs (a little on the hefty side, yet not abnormal). He was fit from swing dancing every week and running most days and some weights. But the neuro dismissed this. I asked him about the hands photo - 'You probably lost a but of weight from your hands and feet as well.' When I explained to him that my hands and feet had started changing in the past 1 and a half months, during which time I HAD NOT LOST ANY MORE WEIGHT. He said: 'Well, maybe you've lost a little muscle and put on a little fat but I doubt it's causing you the trouble you're saying it is.'

Sorry for the rant but is anyone else having these issues? I'm trying to stop an issue from escalating to a point where I don't pass these little neuro tests (I'm not far off this) and it's frustrating when you're not believed, and all you're trying to do is not get any worse.

I've been saying to myself for the past 6 months: 'Oh no, Rob, you're being stupid. You're fine and this new thing is just stress.' That same phrase has been repeated over and over again, when I started getting lightheaded, had muscle cramps, lost weight, and now as I'm losing strength. At what point is one allowed to start worrying? Never, if my parents are to believed.

Rob

Post Edited (ged12345) : 11/7/2011 7:12:06 AM (GMT-7)

I too wouldn't guess Fibro but again Fibro patients have so many other symptoms and mine all started out in my wrist and forearm and was misdiagnosed several times for 2 years and every test came back negative. I would be concerned with the severe loss of grip and use of your hands. I did lose my grip strength over time and is weaker then it should be, but it does not keep dropping in the way that you are describing. I would NOT go back to that doctor again so keep searching and trust me that alone is frustrating to have to keep telling your story over and over and keep switching doctors but once you find the right one you will be so much happier. Good luck!!

Thanks so much for the reply Leeriesan and Tonya! I agree that is hard to find a good doctor who will a. listen and b. suggest rather than c. nod, smile and take my cash. I have seen a rheumatologist and they are the one who suggested it may be fibro, but even he was uncertain because of the additional symptoms. You are both correct thought - I'm thinking of going to a doctor who covers a wide range of specialties rather than a clinic doc. I saw one once a while back (unrelated matter) and they were extremely thorough. The one I'm going to is trying her best but I think she's at the point where she believes this is in my head and how could I blame her? It's not like someone with symptoms walks in every day.

about the photo - it's crazy, right? I'd been about 98 kgs for about 6 months and most of it was from doing 100 situps and pushups a day. I wasn't amazingly buff because that's not really my body type, but I had a lot of inner strength underneath the flab *grin*. The worst thing about all this is that I've never had any major health problems. Nothing. A migraine once. The flu. Some sleep related issues but like most of the people I know who have been to college or play video games - staying up late should not be doing this to me.

Leeriesan, you are correct - I do feel like I'm on a timeline. I'd never thought of it that way exactly but I honestly do. I'm going to mention something and it may sound weird but it was the first weakness I noticed. When I had the muscle cramps on my right side (right side of jaw, neck and down shoulder) I also noticed some facial weakness as well. I thought: 'that's a bit strange' and did some of the crazy face exercises you see on the web. Gave it a try for a month, then got tired of it and stopped. Came back a few months later and the same exercises were much harder to do. Face feels a lot more.. lax(?) then it used to. I know you we don't have a huge amount of muscle on our faces, but definitely less defined then it used to be. And if I've lot weight, shouldn't this be the reverse? I should be able to see more definition. I do know when a really big person loses a lot of weight it takes time for their skin to catch up but I was never *that* big and the weight drop, while substantial, is not massive. I mean, watching 'The Biggest Loser' and similar shows, this does not happen to them.

What bothers me the most is what's happened to my lips. Used to have a bigger bottom lip (ugly but distinctive) that's shrunk substantially. That has never happened in my life, not when I lost a of weight when I was 16 (down to 80kgs I think), not during my 20s when I lost weight (and then regained it), only now, coinciding with this other weakness. I know, I know... this is all purely objective. But my face feels different and not in a good way.

Anyway, I know how all that sounded but.. it's the truth. To me it points in the direction of some all over muscle issues.

Rob

Your symptoms are disturbing. I agree, it sounds like a degenerative muscle issue...I understand your concern

Get another doctor asap!!! What a jerk!!! Women, especially have been hearing "it's all in your head" for decades...I was told that my cramps that made me cry when I was a teen were in my head, my insomnia, my fibro, my bulging discs, all that pain was in my head. You know what, even if it IS in my head, it still means something..it is still a serious issue...I'm not saying your porblem is a head issue

Tick bites can be small and not noticeable, esp. in body hair and Canada's wild would be tick heaven.

Whatever it could be, I agree, it sounds progressive and you need to get aggressive about your care...find another doc right away...I wouldn't wait either...go thru this post and write down all the things you have told us

Good luck and please let us knwo how it goes
Maggie

I agree - please don't wait. I would try to relax your mind a bit. I know all this must be scary but our brains do have some sort of power over us if we let them. If you don't already try to do something that relaxes you every day.
And don't think you are weird for some of the stuff you are saying. Don't be hesitant to say how you are feeling. You should hear some of our symptoms! Fibrofog - getting lost and confused and forgetting stuff, seriously how is that related to fibro muscle pains? We're so weird.... No offense fibro people. :) But fibrofog confuses me.
Its good to include all your symptoms, especially when talking to a doctor. I wonder if that's one of the reasons it took me so long to get diagnosed - I concentrated on my chest pains in the doctor's office because it scared me the most and I thought if I talked about everything else they'd think I was crazy. Five years later I started talking about everything and I was eventually given my diagnosis. So don't leave something out because you think it sounds weird -I agree with Bayoub, I'd write down everything here you said, including the right side of the face thing. I've gone into doc's offices with lists before. They look at me a bit funny but I don't forget anything. Don't give up Rob. I hope you find answers soon, and please don't wait to go to find another doctor.

Wow, some quick and excellent responses! This is the best I've been feeling about all this craziness since it first began, so my thanks.

bayoub2: Ta for the support. You should have seen my old best friend's face when I told her my hands were getting smaller. I mean, it doesn't look like much is going on from the outside - maybe less fit than I was at the start of the year. People don't look at your hands or feet, and when they look at your face, it may look different but I think they put it down to any number of factors.

Anyhow, I'm glad you think it's a degenerative muscle condition too. I mean, who wants to have a degenerative condition? No one, but you can't ignore the symptoms if they're there, as crazy as it sounds. I'm sorry to hear about your Doctor's not believing you. Pain is a very personal thing and is hard to quantify but if you keep telling people you're in pain they should eventually perk up and listen. Not every case fits into a little box, and everyone deserves proper health care, whether easily diagnosable or not.

mamanan: I went to Vancouver, Whistler and Calgary. At Vancouver we went to Grouse Mountain (which wasn't too woody but there were some bears etc). Goes without saying that we didn't pet the bears. :D At Whistler we went for a walk off into the hills, but we stuck to roads and paths without deviating much. Plus, it was freezing both times - are ticks very active during the really cold months? Otherwise, we stuck to civilization, except for hopping off the greyhound buses once or twice when they stopped for a break.

I checked out list of symptoms on here: http://www.cbc.ca/news/health/story/2009/06/04/f-lyme-disease-ticks.html
Don't remember a period of time with any rashes or feeling nauseous, fever, headache, muscle pains or anything like that. Think we were well covered. In Whistler we had these thick rain jackets with hoods, long pants and fairly sturdy shoes. Same with Whistler, but thick hoodies instead of rainjackets. So it seems unlikely to me but who knows?

Talking about muscle weakness... I only started to get weak after I noticed physical changes in my body. It's the one thing that stops me from sitting back and saying 'ok, it's all in your head and you'll be alright.' I had no change in strength until 8 or so weeks back. Was playing video games (hand strength and co-ordination), lifting weights (hand and arm stability), and typing fine etc. Unless this was slow moving and a long time coming (in my body at least, not the face) the only signs were the loss of weight. I was also doing chinups and pushups about 9 weeks ago (stopped for a while but tried to get back into it) with relatively little difficulty. I did note that it was easier because I had lost the weight but that was it. Can't do em now. So this all leads me down the 'progressive muscle change' path.

Leeriesan: I agree, I do think I should be careful when mentioning what symptoms I have to the doctors. I think the fact I've had so many bogs them down and makes them a bit incredulous. For instance - at one point I was getting pins and needles and burning pain in my feet and hands. That lasted for two weeks and coincided with my hands and feet starting to change. Sounds important (got told possible peripheral neuropathy, but my emg was clean so that was tossed to the wayside) but really the main issue is the hand and feet change. Should just stick with that and if they ask for other symptoms, that's when I should explain.

I am really trying to do things that relax me each day, which is great advice, thank you. Went to a movie last night, 'Paranormal Activity 3'. Not that relaxing a film (or that good a film) but getting out was good and the drive-in is always fun. I'm also seeing a psychologist now, just to talk about what's going on. He actually said to me, at the end of the first session, 'So why are you here?'. I explained that my parents wanted me to come and I could maybe work through my anxiety surrounding these symptoms with him. He said 'I understand the anxiety, you have every right to be worried, but you don't seem to have anything major that you're upset about otherwise in your life, so I can't see why you'd need to see.' Made me smile, as I'm usually a pretty happy before all this crap started and have worked through most of my issues in years past. I had some obsessive thoughts when I was younger (20, now 31) but met a wonderful psychologist who helped me out and after a few months he said he didn't need to see me anymore. Since then, I've coped pretty well with life. Stupid illness :D

Sherrine: Hey. That's the first time I've heard of clinical weakness with fibro in my readinsg but that gives me hope. It must be so annoying for you for this to have happened! I know fibro ain't great but at least it's not life threatening, so I'm willing to accept any diagnosis like it at this point.

Another thing that put me onto these neuros is that I was learning guitar last year and doing all these funky finger exercises that my friend taught me. On top of that, he recommended using a rubber band to work out my finger extensors (stretching my fingers out) and a hand gripper like those you see people using on late night telemarketing ads (The HandeeGripper 2000!) to increase my grip strength. I've been using both techniques recently but neither seem to be improving my hand strength. Very strange. Funny that you mention the hand ball squeezer you got from that nurse - as a part of the physio exercises I'm doing recently, they make me do that as an exercise too. Stronger hand is luckier and gets some putty but my weaker left hand gets what looks to be an old dog toy. Should be helping but doesn't seem to be even though the physio assures me it will. She keeps saying how strong I am, but she's a slender reed and doubt she understands. Testing my hand grip pressure next week so we'll see where I am with that. I hope these exercises start work!

Thanks for the Lyme link - I wll check it out! And thanks to everyone on urging me to find another doctor. I probably will have to pretty soon, just to see if they can be more of an advocate for my health, rather than just prescribing tests. I just want to stop being such a darned sad sack all the time and deal with this issue, if possible. I realise now that I've taken my health for granted all these years and I should have been using my good health as an excuse to spur myself on to greater action because I was so well. It was just hard - I sacrificed a lot to look after my sick ex-g/f.. feels like I've sacrificed one more thing now. My time being healthy.

My gratitude to you all,
Rob

Hey Flex!

http://www.agf.gov.bc.ca/cropprot/ticksbc.htm

This says there are some in British Columbia but you are correct - does not specifically mention any of the areas my friend and I travelled to. Other then a few stops hopping off the bus when travelling to Calgary, not much else to report

My girlfriend had Type Two Mitochondrial Disease (unspecified). That's as much as I remember. It's a genetic condition that causes the energy producing cells in the body to shut down as they have issues converting basic fuels into energy. It's manageable but she had to have Vitamin C and B12 injections each week, maintain a strict diet etc. I used to take her to help her get the injections when she was well enough to go. It's non-communicable, as far as she told me and as far as I have read. She had one other sexual partner before me, so recently I was tested for things like HIV, Syphillus, Hep B and C etc. No dice. They also tested some tumor markers - generic, bowel and one or two others. All clear. I only mention these because of my fears at that time and the fact I hadn't had another sexual partner for about 7 years, so I was worried about her former partner at the time :D

I have not been to a cardiologist. Definitely might be something to look at. I do know that when I was in the hospital for the 9 or so days it took me to wait around for an EMG/Nerve Conduction appointment (it was either wit in hospital for those 9 days, or wait 2 months for an EMG so I bit the bullet and waited). Anyhoo, during those 9 days they regularly monitored my blood pressure, temperature, pulse etc. Would something like lack of blood flow cause a change in any of the above? They also checked my hands and feet, so I assume there'd be some colour change associated with this?

Thanks for the suggestion, Flex. I'll keep you posted.
Rob

*hehe* Ah, I misunderstood. Well I've been laying the symptoms on them but I think that if they're not used to dealing with all this stuff they just give up.

Currently looking into the Lyme diagnosis and it does fit a lot of my symptoms. Hard to get treated for it where I am, as they say it doesn't exst around here.

Post Edited (ged12345) : 11/9/2011 1:39:30 AM (GMT-7)

Hey Maggie,

I have indeed had my head MRI'd. It showed nothing special (possibly a brain). Had 2 neuros at the hospital look at it as well and they said they could not see anything too remarkable either, so that at least I can cross off my list. But it was a great suggestion :D

My thanks,
Rob