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Hi

Got all my results, they are clear and he said its not a neurological problem. He feels its a joint problem and is sending me to a joint specialist ( which i guess is a rheumy) so its more tests more explaining!! in the mean time as these things take time on the NHS i seem to be getting worse i'm using both sticks still and wheelchair when i'm out and i'm in so much pain still in my hips,shoulder and back. I've been going to a chrio and he said he could help but its so expensive i've been four times and have to stop now as its christmas coming and just cant afford it.
I've been trying to build myself up by exercising and using my stepper but nothing seems to work i guess it will be a long journey, hopefully i might get a dx next year, i'm going back to my doctor tomorrow to discuss if there is something she can give me or refer me to a pain clinic.

Samantha
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hi, i relly don't have any good advide for you, I just wanted to tell u how sorry i am to hear how much pain you are in!! I know how it feel!!! i hurt so damn badly EVERYDAY!!!
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Hi,  I sent an email a little bit ago.  At least they are moving forward - even if snails crawling backward go faster.  About that exercise - stop it.  

The key is graduated exercise, notthing that will trigger ANY increase in symptoms in the hours/or days afterward.  That might mean 1 minute of exercise a day for 3 months and then working up to 2 minutes.  It took me five years to get from 1 min of walking to 30 minutes.  I wish I had a scanner, so I could scan in various articles for everyone to read.  There's a whole evelope theory article on this in the cfids association back issues, and at this point everyone knowledgeable in cfs will tell you - graduated!!  I've been trying to add simple arm and leg movements to my walking on the other days.  I'm finding 5 minutes is too much (even though i can do so much else), and haven't been able to convince myself to do the 2 minutes I can tolerate instead of doing nothing.  It's sublte that the 5 mins makes we worse but it's important to listen for those subtle signals as clues on what's working and what's not.

Also, there's a lot of joint flexiblity and sloppiness in most cfs folk's bodies, so any movements should be cautious not to over stretch or pull a ligament.  (I have an article on that too.)   I've described this to on other threads for someeone...

Sleep well - or at least better!
Cheri
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Hi,

Its hard not to push yourself sometimes but the chrio said the same walk 5 mins a day for two weeks then increase it by 2 mins and so on when you feel you have done too much reduce it again.

I only ever do the streatching exercises every other day now ( the ones the O.T gave me) as she said you need to leave a day inbetween as your body feels like it is doing the same as a body builder and the pain you feel the next day is the lactic acid building up ( not sure i've spelt that right) .

Thats amazing amount of time, i sometimes forget how long you have been ill, do you think i have fibro or CFS? do you get alot of pain after walking or just extreme tirdness?

This really could be a long journey!!! once you have fibro i know you never get rid of it but learn to mange it ( the best you can) is it the same with CFS or over time does things improve and slowly you get your life back?

I think i mailed you back on your the email you sent. hope you are well.

Samantha
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Hi Sam,

I'm headed to bed, but wanted to say hi before I did.  Hope you are feeling better at least a little.  I've finally finished my financial stuff so hopefully tomorrow (or soon) I'll have time for some other things like emailing (and my sister wrote me a long one I want to respond to.)  She definitely got a warm fuzzy from the birthday, and I'm so pleased.  Have you heard the expression "shinning your ILAC?  ILAC = "I am lovable and capable".  It's from the 70's-80's feel good age and a terrific camp my sister went to.

I think one part that was then missing after the email went kapooy the other night about one of my banks, of all unusual things, going into default (it was federally insured, so no worries) so i was busy rearranging financial things.  I've been very remiss in that anyway, so it was a good thing.

The prognosis is so incredibly varied on both of these illnesses from full recovery to completely not.  The majority of people improve quite a bit from onset.  You are starting 10 years after me, so maybe the next 10 years of research will give something good.  To answer the walking question, I'll have to think and write bit...so I'll come back to that.

Talk to you soon,
Cheri
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Interesting.  I am afraid to do anything after going to the store for a 5 minute grab and ended up in agony the rest of the day.  My husband said we should go walk and I declined, didn't want to go through the after pain. But 5 minutes, I could probably do. I walk to the kitchen and clean it up for longer than that.  Stretching feels good, should I do it every day for a few minutes?  Does a jacuzzi help with the pain?  I just woke up and now have pain in my chest and under my arms. Lovely. I like your ILAC, but sure doesn't fit me at the moment.  5 days on the Lyrica and no improvement. So if you have any more suggestions for easing the pain, it would be great.  UK;  did the chiro work?
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Hi

Stretching is great and if done a little everyday works well but if you find pain after it reduce the exercises or time and work with your body, there are some good exercises on the internet if you do a serach i printed some off specially for fibro and CFS.

I've heard a hydro pool is good for the muscles its like a warm bath sessions over here are normanly £4.50 but i'm not sure if you have them over there.

Yes the chrio helps alot although i have had to stop it as expensive, i think a oestopath would help more and when i have some more money i am going to book with one of them as they work on the muscle more then the joints. All these type of things are good as when you have a chronic pain condition you dont exercise as its painfull so then the muscle waste making the joints unstable leading to further pain, it only take two weeks to lose muscle strength throungh not activity. A PT should be able to help you do some exercises that will build your muscle up too, i have a OT who can me some exercises which help with my pain and balance issues.

Hope your not in too much pain.

Samantha
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Hi Sam!

To get back to your questions... do you have fibro or cfs?  My origiinal impression was cfs.  You've talked about pain, but it's been focused on a few areas which were injured before.  Having some other pain through out the body its common in cfs and doesn't mean it's FM.  Hum, now I don't remember why I thought of cfs instead of fm.  I think it was that it so closely matched the profile I'm used to hearing, in email after email.  The two are so close though that it can be hard to tell.  I'm not sure it matters much which one it is.  It determines which type of doctor is going to shake their head and not know what to tell you: ) ??  FM and CFS pain is similar but much more intense and THE  focus in FM.  In CFS the fatigue, or muscle weakness (or immune abnormalities like sore throats) are more the focus.

(Now that I've written this - warning - it's long about the exercise)
When I walk... I feel energized by it even if I overdue it, so the endorphine hi isn't much of an indicator of good things.  The crash on overduing sets in around 6 hours later as a muscle tightness, slurred speech, brain fog, and feeling "crummy".  If I don't overdue it, as I walk I feel okay, then like I have to work at it a bit.  I stay under the amount that feels drawing in my body.  It's so subtle and hard to put into words.  I've learned over time to coorelate this sensation and others that, go with pusing the NMH blood pressure drop.  Another one that's the beginning of too much is very slight chest pain on left side (that pain is part of NHM).  After the walk, I sit still legs up for an equal amount of time that I walked.  During that time I feel my blood flow - you how even healthy your blood pumps after you exercise?  After that time, it all calms down and feels like nothing in particular.  It absolutely amazes me that the pumpig feeling lasts exactly as long as the walk lasted.  I used to fall asleep afterward though sometimes.  While resting I don't talk on the phone, type, read or anything that uses muscles.  I find if I do, then those muscles don't recover well, and don't feel as good until the next time I exercise and let them recover properly.  

What's happening during the rest is that in the CFS with dsyautnomia body, the blood isn't flowing properly and there usually is a reduced volume of it so the rest allows it to go back to usual.  Otherwise, you're working with less than normal blood that's being used in more of the body than it's available for...so it's easy to trigger a crash where the body acts like it's had an NMH blood pressure drop.  I'm sure this is very complicated sounding.  It helped me figure out how to monitor my own body and stay under the trigger limits.  Actually, very, very complicated sounding.  After the rest period I go back to my usual stuff whatever it happens to be and feel same as usual.  I do tend to be a bit perkier for the rest of the day and able to stand more such as doing shopping.

When I started I had to rest frequently use to do a few minutes. But did it daily starting with 2 minutes a day.  Now that's something to see on a to-do list.  If I do the basic muscle strengthing exercises that I mentioned, and do more than 2 minutes, I feel find, maybe a little winded.  However, the next day or two, I don't feel as good.  More fatigue, more fuzzy in the head, more fuzzy in the muscles - now that's an important clue sensation for me - but how to I describe it? They just don't feel as good or as strong.  I may have more burning in the muscles, low level pain in them.

If I say join a volleyball team for a few minutes, or dance, it feels find, but my breathing in faster and the blood pressure goes up - which feels good - but it's too much and then a crash sets in.  The good feeling can be a clue of overdueing it.  If I sit for the rest of the day and let my body rest, sometimes I can avoid the "crash".  

There was a special moment for me when I could go more than 22 minutes in a walk.  Up till then one is in aneorobic stage and it feels one way.  After 22 mins or around there one switches to areobitic.  It feels different.  Originally getting into that triggered me for sure - that's cfs typical.  Very gradually I worked on it till I got past it.  (That was a fun call to tell people.)  To me getting into the areobic helps the quality of my sleep and I think is probably helping my body at healing.  But, most of the time CFS folks can't get there.  It took years.  I could do 15 mins more quickly, and probably close to a year to get over the 22 mark.  I tried pushing it up to 57 minutes, but I always felt a little more crummy afterward (in the days afterward), and it was building up as being worse, so I finally had to quit and cut back to 30 minutes.

I do no walk on bad days or days when I haven't rested enough.  It guarrantes an increase in symptoms for several days that then have to be recovered from with more caution and restful-ness activities, and feeling lousy meanwhile.

Well, that was long.  I hope it's helpful in some way.  It's all so subtle so hopefully my going into detail will help give a sense of it (instead of just being boring.)

I'll get back to your email too - I promise : ).  I did a bunch of shopping tonight so I'm quiting while I'm still typing some of (but not many) of my words correctly.  At least I now exactly what I need to do to fix my faucet - hire a plumber I think unfortuanatly.  Hope you are doing better, and not still in that slump you hit!  Or at least overdoing it...buying great presents, and festivities items.

L,
Cheri
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Wow that was long, you put so much effort into your replys it really touches me you find time to help others such as me.

That really makes sence, i've found out a lady in our church has CFS from a viral infection that went to her heart, three years on she has managed to get back to work two days a week ( a sit down job) but i have talked to her alot and the crash and burn is so simular to what she goes through, i've asked her if she gets pain when she walks but she does not but what she gets is s sudeen drain of power she feels all funny and has to rest, then she will feel awfull for days but she has no pain at all no muscle burn nothing, she also has the sensetivity to medicines and chemicals which hidens her alot. She also gets the sore throat and flu like feeling her glands come up too and she gets a low grade fever.

The difference is i get pain when i walk,sit or lay i have a level of 5 most days but in a flare it goes up to a 10 or if i push myself past my comfortable level it shots up. I

i get;>>
word recall issues
memory problems
sinus issues
tinitis in right ear and pulsing tinitis in the left ear.
muscle spasms
jerking limbs,
blurred vision
Nerve pain in feet,hands and arms
sensitive skin areas where i cant bare to be touched
hip pain
shoulder pain
elbow pain
a feeling of moving even though i am still

I wonder if the two conditions overlap? i'm certain as i have intence pain that it is FM but i dont really think there is much difference between the two.

My neuro rung me yesterday and wants me to come in on this thursday, i thought he had done with me, but i think my doctor had a word with him telling him i am in alot of pain and if he could try and help me out and see me again to talk about things and maybe get my pain under control before the christmas holidays begin and while i wait to see a rheumy. I'm nervous as i thought i was not seeing him again and he really makes me nervous but i'm going to write all my sx downs and show him a last ditch attempt to get an answer, i had thought of asking him if he thought i had fibro, what do you think?

I hope your well and all prepared for the holidays. Dont worry about emailing hun i know your busy and i never take offence if you dont write back for a while.

Samantha
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Do you ever have tremors?  My hands feel shaky a lot and if I hold them up, I get trembling.  I am in a flare and want to try the exercise, for sure. I made it out yesterday without much pain afterwards. In the evening it didn't even hurt my arms while driving.  Sure hope this is better for the holidays, and hope your's is too!
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Avatar_f_tn

"i've found out a lady in our church has CFS from a viral infection that went to her heart"

You may want to google, "Dr. Paul Cheney" + "diastolic dysfunction". This heart condition is seen in many patients with CFS.
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platelet

thank -you for the info hun, ill google that and pass it on.
Is your site still running?
I talked to an ex GP today she is a friend of the family and she was refering to my car crash i had in nov 2006 that whiplash can lead to or give sx like fibro, she also stated that muscle loss can occur very quickley due to inactivity as the pain level is too great to exercise, she said if i get intense thearpy and the right pain medication she feels i can regain some normal life back, so i'm going to push for my neuro to refer me to a pain clinic when i see him tomorrow what do you think?

sfbay

My hands do shake yes but only on movement and in a flare. I hope your pain level stays down, dont do too much though as it can make you worse. Take Care
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Thanks for letting me know about these tremors. I am real shakey (shaky) and wonder if some of is now from the Lyrica.  I couldn't go to the appeals court today to hear my hubby's oral argument that I have spent a lot of time working on.  boo hoo!  I really wanted to go. But the subway and walking and all worried me. I didn't want to take the chance of just melting on the way or back.  Pain and migraine last night....I know the headache was the Lyrica. Pain is pretty much gone at the moment and hoping it stays that way.  A Pain Management clinic sounds good. My Dr. is great at the pain meds and I will stick with him, unless it is too unmanageable.  
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Hi uk2,

I still have my site... thanks for asking.  I think your friend's idea is a good one. I don't have fibro myself, but considering the fact that you've been in a car accident... I believe it is a good idea. Acupuncture has also been shown in studies to help with pain and even the pain that many fibro patients experience. If those treatments are too rough, you may want to consider getting acupuncture afterwards. Trust your instincts and GOOD LUCK with your new treatment plan !
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Avatar_f_tn
What a great suggestion - Cheney's heart findings!

With CFS I had a LOT of pain for a while until I left work and could rest and minizime and get it down.  My joke about which doctor you go to was to say - the two are so similar with some many overlaps that it may not matter which one you have.  Although I'm seeing this forum and from the couple times I went to FM meetings, that exercise does more for FM often, while it ususally is more harmful with CFS.   When I worked and it was down to 3 days, I'd come home the last one, and put on headsets and call my dad.  He rambles once you get him started.  So I'd listen to him while my muscles relaxed.  The reason I did was that the pain increased so much more as the muscles relaxed after pushing myself (to be not in bed) and it was too intense to handle so I'd use my dad's voice as something to distract me and something nice while I waited for it to stop.  I used to take very hot baths afterward that helped, but mostly I needed to detach from my body while it was happening.  The pain still increases if I push and then relax, but I dont' let it get to the same levels anymore.  I think you'll get a sense of which one it is CFS/FM as you look at them, but it's not a critical at first.   That it started with a car accident is more often FM.  I know it had sounded more CFS at first to me, but I don't rememeber why so that's not much help at all...  As for your symptoms list above, that could be either one...and I KNOW you have more symptoms than that which you've described to me.  It's so hard to remember them all with this illness set isn't it!

Exercise with a PT - worth a try if they understand FM at least a little. Some people do well with it!  I had tried early on with someone with a reputation in the FM community, but even the little bit was too much for me and it was a 45 min drive so I finally stopped.  Other PT with myal facial stretching helped me "feel more like I was in my body" again, in a significant way.  I tried a less experienced, closer OT who didn't really know FM and that was awful. She kept suggesting things I knew better than to do, and when I'd finally tried them, not good and she wasn't catching on.

As far as muscle tone loss though, yes it losses easily, however, it also rebuilds easily.  The whole muscle tone loss thing I've seen talked about only when doctor's are trying to come up with a reason why CFS patients don't move much.  A kind of they were couch potatoes, or got injured, or sick, and lost muscle tone, so now they feel fatigued and weak and can't do much.  It's another version of "it's not real".  You and I and everyone else hear knows that's nonsense.  On Wed I jogged 1/2 hour, on Sun I had to rest on the way walking to my car?  So exercise and keeping up muscle strength can be helpful in keeping muscles lose and functional and able to do basic jobs.  However, don't worry about lossing muscle tone as a reason by itself to do this.  That's just from a bad theory that had me worried for a little while too.  Oh, they are comparing to bedridden people who have to be turned over every few hours and similar levels - we actually do a lot more than that.

Sfbaygirl - I don't know much about tremors so i'm not much help there.  If it's new symptoms with the meds - suspect the meds.  They can do all sorts of things, especially in a CFS sensitive body.  (We have a family joke from when I was talking Elavil...  So, shat dose do you think I should take tonight?  One lick or two licks?  I'd been smashing the pills, and taking a smidge, maybe 1/72 of a pill...and I was still having both positive and negative reactions.)   Unexplained new headaches, which often includes migranes (migraines), are a symptom of CFS and are one of the specifically mentioned ones.  I think that true in the current CDC definition.  I know it was in the prior definition (that was later simplified into this one and had a whole list of symptoms to pick from).

Hope you are all doing well!!!  I'm going to keep trying to read up the new posts and seeing what's happening : ).
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