New finding my feet

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Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 9/5/2010 4:07 PM (GMT -6)   
Hi to all
A new acquaintance put me on to this site, I am a single mother to three children, 9,8 and 5yrs.
I have been reading a lot and still have many questions.
I have been ill since early this year and after a few different doctors I have been told that I have fybro and possibly sleep apnea.
I have my sleep study tonight, so it will be interesting to find out if I stop breathing while I sleep.

My specialist did the fybro trigger point test and as you can imagine I was reacting quite interestingly blush though we are hoping to blame sleep apnea for a 24/7 headache that refuses to go away as well as fatigue, weak immune system, exhaustion.
My special is not 100% certain its sleep apnea but rates it his number 1 culprit, hence trying it first.
Paracetamol and anti inflammatory meds are of no help for muscular or my headache.
I am studying and have been struggling to complete assignments due to concentration and brain fog, I know the work, but getting onto paper is a struggle. We are also hoping to blame sleep for this too.

The thing that stumps me is, resting is good for me I have found, even though the doc tor says otherwise. My muscles burn, twitch and are sorer with more that I do. Primarily in my limbs.
I have a friend with fybro and she is the opposite, has to keep moving.
The only time I am stiff is sometimes after a nice hot shower my lumbar stiffens and if I drop something I get my children to pick it up, and sometimes my lumbar is stiff in the morning when I wake, and both usually clear by lunchtime.
Otherwise my all day everyday is muscular burning and twitching.

Initially my CK enzyme level was quite high and blamed for my muscular complaints, but as it braked down and come back down to a normal level my muscular complaints continued.

My gp called the muscles burning and twitching randomly - fasiculation.
I feel that if I can get the headache under control I can better manage the muscular fun and games.
Yesterday I spent way to long standing and walking and got home and lay in my bed hurting till I fell asleep, thank heavens my kids don't get up to too much while I crash.
Sorry to jump in thoughts, initially it hurt to sit in a chair, wherever the pressure on the muscles was, same with resting arms on the table when eating. Sitting on the recliner is ideal, as its soft.

Q: Do others have muscular burning?
Q: Is it helpful to have a muscle biopsy?

Any thoughts and questions gladly accepted.
With thanks

Forum Moderator

Date Joined Nov 2008
Total Posts : 5923
   Posted 9/5/2010 5:29 PM (GMT -6)   
Welcome, Mum! You've come to a great place as far as getting and giving support. We all know something about something, and nothing about something else... (that was a mouthful!) So we can really help eachother.

My pain is about 80% on my left side - sacroiliac through neck. Yes, often it's a burning pain. Like you, I also have more pain the more I do. Over the years, I've tried to increase my activity level, tried physical therapy 3 times. All it does is make my pain worse, and it doesn't improve with time. I'm not a couch potato - I move a lot during the day, up & down stairs, putzing around the house, shopping, and I walk around the block or mall every day - that kind of stuff. But if I try to actually "up the exercise ante" I get into trouble every time. It's very discouraging. For me, the hardest thing is lifting (and I used to be very strong!) I've learned that if an object FEELS heavy, don't lift it, even if yesterday it didn't feel heavy, and didn't get me into trouble.

I can't help you as far as muscle fascilations or biopsies go, but someone else probably can. Hope your sleep study helped solve the mystery.

...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

Veteran Member

Date Joined Nov 2008
Total Posts : 2854
   Posted 9/5/2010 5:35 PM (GMT -6)   

Hi there, and welcome!  Many with fibro describe their pain as sharp and stabbing, aching or throbbing.  Mine has always been burning/stinging...mainly my thighs, hips/butt and upper arms...sometimes my back if I sit slouched over the computer for too long.  I too have not found exercise to help the pain...but most do.  I try to exercise anyway, even if it's a walk to keep from getting stiff.  But I usually have more pain afterwards.  It might not be due to my fibro, but disc compression, spinal stenosis and other back problems I have.  I tell the hubby I feel like I have stuck my arms and legs in a beehive, then set myself on fire.  Somedays are better than other, and that's how it goes with fibro.

I hope your doctor has ruled out the other disorders that can mimic is a hard disease to diagnosis and is usually given as a final dx when other testing shows nothing abnormal.

I have never had a muscle doctor ever suggested one.  Good luck to you in finding something that helps...for me a hot bath is the only thing that gives me relief, even though it's a temporary fix.  Fibro is not an inflammatory disease so it's not surprising that NSAID's don't provide you with relief.  I take Advil and Tylenol because I don't like how the traditional fibro meds make me feel...but others have had great success with some of them.  At best...Advil just takes the edge off.  And  muscle twitching...oh yes.  And the feeling that my muscles are 'buzzing'.






Regular Member

Date Joined Aug 2010
Total Posts : 171
   Posted 9/6/2010 1:59 AM (GMT 0)   
Welcome mum3. You have found the best site on the web for advice and support. I have burning pain in my muscles also. I hope you have a good doc who is supportive and listens-unfortnatley for us fibromites-that's half the battle. Check out the fibro 101 thread at the top, there is a ton of helpful info there.
Dx: Fibro, HTN, Depression, IBS, Lupus like symptoms

"The Lord is close to the broken hearted and He saves those whose spirits have been crushed" Psalm 34:18

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 9/5/2010 10:36 PM (GMT -6)   
Thanks it is nice to be among what it considered normal or sain.....
I had not read a lot of sites that claimed burning as part of fybro, so this is why I asked.
The specialist I saw was not keen for any pain relief just yet. I think he wants to see what the sleep study shows and go from there.
I plan to find out more about targeting the nerves, I read on 'one of the sites I was on' about beta blockers and anti seizure drugs, I don't understand them, but I would like to, to see if they could be worth trying.

Anyway, I will come back online when I know more after my sleep study and I might be able to pick some more brains.

Take care

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 9/8/2010 2:26 AM (GMT -6)   
Thankyou, for your help so far.
I had my sleep study which I would not be in any hurry to do again.
The technician was unable to tell me anything, but that there was a bit of snoring.
I have to wait about 2 weeks till I see the specialist, by which time he will have the official report.

I did get a phone call from my gp today though, last weeks CK (muscle, not heat ck) is back up to 175, it had gone down to about 70-ish. This throws me and I don't understand it.

Does Fybro, make CK levels fluctuate?

Veteran Member

Date Joined Sep 2009
Total Posts : 663
   Posted 9/8/2010 6:25 AM (GMT -6)   
Hi Mum and welcome to HealingWell. I am so glad you found us. This is a wonderful sight with so many caring members. You can also get alot of information here, because usually someone on here has experienced the things you are going through and can give you some insight. Please keep posting, I think you will like it here. Take care.
Gentle Hugs,

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Regular Member

Date Joined Jul 2010
Total Posts : 62
   Posted 9/8/2010 9:46 AM (GMT -6)   
Hi and welcome.  I'm sorry you are having such a difficult time.  I'm sure in time your doc will find something to confirm and then work on finding relief for you.
Tylenol and Advil don't even begin to phase my pain.  It's a waste for me to even try to take them.  Aleve makes me very ill.  It is important your doc is thorough in investigating what it is going on.  I know it's hard right now, but just be patient. 
My muscle pain goes from just an intense ache all over, to burning, stinging pain.  The burning stinging pain bothers me the most I think, just because it's a strange feeling.  
It's good your kids are helpful and old enough to manage for a little bit while you rest.  I honestly don't know if I would have been able to handle it had my fibro hit me while my 3 kids were still at home.  Just having my grandson for the day completely wipes me out on a good day.
Dx'd with fibro, oa, and carpal tunnel.
Rx's: Lyrica 150mg 2x day, Savella 100mg 2x day, Nortriptylene 100mg at bedtime, vitD3, fish oil

New Member

Date Joined Sep 2010
Total Posts : 19
   Posted 9/8/2010 10:36 AM (GMT -6)   
Hi. I hope that your sleep test goes well. I had one and I stopped breathing 7 to 8 times. I was told I flip and flop from one side to the other to my back. The doctor said usually with 10 times to stop breathing that is when they put you on the cpap machine. The other night I woke up gasping for air, scared the heck out of me. Muscle pain is the worst. I am glad that I found this site to talk with others going through the same thing that I do. I want to support others and I want them to support me. I love to sit in the warm water but sometimes the after effects are the worse. I am a divosed mother of 2 boys, and they were younger when I would feel horrible they would let me rest. My oldest son would help me with the younger one. It is so hard when you are alone. I am on my second marriage. Met my husband on line. He has alot of issues that are simular to what I am going through. He is a 18 year vet. Just recently started going to the VA. The sullivan doctors can't find out what is wrong with him. I remember a funny thing that happened to me, back when it was just me and my boys. I wanted to sit in the bathtub so bad, I felt horrible. I had to have my oldest son help me get out of the bathtub. How embarrassing. I remember wrapping towels around me and him helping me. I asked him the other day if he remember that, and he said he remembered helping me but nothing else. Thank God. It is horrible to need help especially from our children. You hang in there and my email is if you need to talk. I am still trying to figure this site out. I will be praying for you
Sunny's email is in her profile.

Post Edited By Moderator (Sherrine) : 9/8/2010 11:05:34 AM (GMT-6)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17056
   Posted 9/8/2010 12:04 PM (GMT -6)   
Hi, Mum, and welcome!  Your thread sneaked right past me!  I didn't see it.  But, I do see the members have greeted you and have given good info.
Ibuprofen and Tylenol do work for me but I take 600 mg of ibuprofen at a time.  Anything less does nothing for me.  I can take that much four times daily and still be in the "safe amount" catagory.  I also use malic acid/magnesium supplements and vitamin D3 supplements.  These have helped me with pain and fatigue and you can find links in Fibro 101 all about them and how they work in the body.
I'm glad you joined our family and I hope to hear more from you soon!
Forum Moderator/Fibromyalgia
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 10/15/2010 4:05 AM (GMT -6)   
I'm back again....
I got my results from my sleep study, I have mild to moderate apnea, and I am to see a Thoracic specialist this coming week. My apnea is central I think, as it is primarily brain waves, not my jaw blocking the airway.

I have a question though.
I have had about 5-6 weeks of a pretty good run, I have been able to manage my pain levels, by not over doing things, but keeping busy helping out at my kids school with the kids doing maths and English. For me being on my own, I find being around others and helping out keeps me distracted enough to manage my pain without any drugs. I think I have a fairly good pain threshold.

3 days ago I started to get extra tired and my pain getting worse, yesterday I spent the day in bed, as I did today. Pain level is only just bearable.
But as I know other can appreciate, with young children there are things I have to do, at 5, 8 and 9 they are not teenagers that can take on adult jobs around the home.
I have to get them to school.

Don't get me wrong, my kids iron easy things and I have been teaching my eldest 2 to iron their uniforms, the youngest uniform doesn't require ironing.

I have arranged for my son to go to my friends house for 2 night over the weekend to give me a bit of a break. He is adhd and his pead has changed his meds to try to alleviate some of his anxiety. Which is working, but now he back to being really hyperactive. But on the positive side I can talk to him, when he stands still for more than 5 seconds..... :)

Anyway to get back on track.
This is not the first time I have had a pretty good couple of weeks then a crash.
I light heatedly call it my 'crash and burn'

**** I am wondering if others have a good few weeks then a flare up? ******

I thought flare ups where a MS thing not so much a Fybro thing.
My specialist is hoping that once I get on the sleep machine that my muscular complaints might get better, if not then he plans to investigate things more....

Any thoughts more than welcome

lost in philly
Regular Member

Date Joined Jan 2009
Total Posts : 243
   Posted 10/15/2010 5:55 AM (GMT -6)   
My docs followed the same route. Rule out sleep problems then move onto the fibro Dx. However your elevated CK levels point to something other than fibro. MS? Lupus? It is also possible that you have two issues...I have read that fibro often comes on right before something else. You need to really push for a reason with the CK levels. Your other symptoms do sound like fibro but that is up to your doc to decide. Try to get them to send you to a rheumy. A rheumatologist can decipher which or both issues you are dealing with in a hot second. Where as your gp may take much longer.
Try to stay calm throughout all this decision making but be assertive with your health, which it sounds like you are. Keep a record for yourself what your symptoms are and what the docs have said. This will help you be proactive with each new doc you see.
You can overcome these problems and live a happy life. Hang in there! We are there for you!

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 10/15/2010 6:07 AM (GMT -6)   
Thanks Tracee
I have been looking up drugs on the net, I want to propose to my doctor gp, to try something like Lyrica.
I take Fluoxetine 40mg daily after going thru an awfull seperation and with my son's condition.
Fluoxetine is a ssri, and I read that Savella and Cymbalta are ssrni meds.
Lyrica is claimed to be less potent than Gabapentin, but I have not been able to find info yet to say if you can take these when pain is at an unmanageable level.

It is correct that MS can only be definatly diagnosed with either a MRI or lumbar puncture?

My specialist told me that my bloods did not show any signs of Lupus.

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 10/15/2010 6:28 AM (GMT -6)   
Also the specialist told me he wouldn't be too worried unless my CK levels were up around the 1000, mine were 470 when they were last raised and they came down to under 100, then some weeks later went back up again and came back down again.

I have tried to find info on CK levels and all I could find was that them being raised was due to an autoimmune disease, but I wasn't able to find details on unsafe levels and the effect they have on the body as they decrease, or while they are raised.

My gp (local doctor) has the opinion that when the body is decreasing the CK level it deteriorates the muscle and causes pain, but when I queried the specialist he didn't agree.

I have noticed my arm muscles are not like they used to be, I have a flat spot in my forearm and they feel like they dip in places along the arm.

Veteran Member

Date Joined May 2010
Total Posts : 1556
   Posted 10/15/2010 10:32 AM (GMT -6)   
Hi Mum, I believe that the weather can play a huge part in how we are feeling. I know that when the weather is nice out I feel so much better than I do when it is raining or cold out. You asked about an MRI and a lumbar puncture as a way of testing for MS and yes that is probably the only way for a definite diagnosis. Those tests show the lesions on the brain and spine that no x-rays will pick up. In the old days the only way they diagnosed it was to put the person in a really hot bath or shower and if they passed out they were diagnosed with MS. I only know this stuff because my husband has MS. I sure hope that you feel better soon.
Gentle Hugs
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17056
   Posted 10/15/2010 10:57 AM (GMT -6)   
Since you have been managing so well without drugs, have you tried malic acid/magnesium supplements and vitamin D3 supplements.  Many are deficient in these and they have sure helped me a lot.  Between these two and ibuprofen with food and extra strength Tylenol, I have managed to be in control of my pain.  It is very important for you to be in control and not be dizzy, etc. because you are on your own and handling a lot with such young children.  I give you a lot of credit.  It isn't easy but you seem to be handling things magnificently!
If you are interested in knowing more about the supplements, there are two links in Fibro 101 all about them and how they work in your body.  I hope this helps you.
Forum Moderator/Fibromyalgia
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Regular Member

Date Joined Sep 2010
Total Posts : 22
   Posted 11/6/2010 5:22 AM (GMT -6)   
My sleep machine should come this Monday or Tuesday, I am very curious to see how soon I feel like I am getting a better sleep.

Ck levels: after discussing ck levels with the sleep specialist he confirmed for me that sleep apnea will not interfere with ck levels. I returned to my GP (everyday doctor) and discussed my new knowledge and politely asked him about pain relief. I have been reading and researching, and I told him what I understood and asked what I did not.
I was told "you are a single mum and anything I give you will make you drowsy"
I replied with "what is difference, when I feel that crappy I can't bring myself to make dinner for my kids and I tell them to make themselves a sandwich" I figured at least a little drowsy I can cook dinner..and also we all react differently to drugs so his blanket comment frustrated me. He then also refused to refer me to a Rhumy.

I have since seen my old doctor who is 1.5hrs away while I was visiting my mother and aired my frustrations. She had no problem with referring to a Rhumy and I also told her I had not been able to find any information about ck and its role in Fybro. She replied that Fybro does not put your ck levels up. So no hassles Hopefully I can see the Rhumy before the year is out, as there is a bit of a wait.

Never the less I then described my pain to my old doctor and she has me trying Mobic for one month to see if it helps in any way. So far I think it kinda takes a slight edge off, but tonight my arm bones are really aching/hurting. And an edge off that would be great, bring on bed time....

I am hoping that my immune system will pick up after I have been on my cpap machine as I have read poor quality sleep can bring your immune system down. I have had hayfever/sinus, runny/congestion for over a month now and it gets a bit frustrating.

I have my supplements now and have made myself a list of my morning meds and I do my supps at night, I take tabs for diabetes and fluoxitine each morning so its nice to split up the amount of pills one is swallowing.

Do any other people have any issues with putting on weight with all that is going on with their fybro, I am eating well and not overeating, etc etc and I am gaining, I have been since I got sick. My thyroid test are always fine. My old doctor even noticed right away I had put on 10kg, over 6mths.
My food intake is ok for the lack of activity, I dont really eat much at all. Some days I have probs with swallowing solidish foods, so I stick to easy go down stuff.
I don't think its my gastric band I had a swallow exray and the spec said my esophegus works slowly. Its got a bit worse with this.

I still question the fybro, I am not 100% convinced that's what it is.

be proud to be stubborn and strong willed!
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