Bizarre symptons-fibro CFS?

ok folks, I've got a bit of complicated scenario going on, and not getting any answers from docs despite extensive tests by infectious disease, rheumatism docs, endocrine docs (I had acromegaly in 2000- was 'cured' via removal of tumor- but the acro wasn't causing my symproms that I'll describe below) seen by many different docs- Some suggest Fibro- some write it off as my Crohn's - some suggest it's just my sleep apnea causing the issues- (However I'm no longer snoring at night but don't know if I'm still partially waking many times an hour or not- I can't use the sleep apnea machines because of ostomy issues)

Symptoms- Exercise intolerance-

I can only do physical activity like walking, or raking for about 10 minutes before muscles begin to burn and hurt bad enough that it makes me stop- If I over do it, I find I have to rest for 1-3 days to recoup- as I'm overdoing it I get weak, shaky, sweaty, sick to stomach, thinking becomes very tough- feel like I'm going to pass out.

Burning Muscle pain-

My muscles burn like they have a buildup of lactic acid- this burning hurts- it's constant, even at rest- worst area is neck shoulders- but arms, legs and back muscles also affected-

CONSTANT muscle tension- which is the cause of much of the muscle burning pain I believe- I was on hydrocodone for about 3 years, and this helped alleviate the tension quite a bit- I came off the drug, and now docs won't re prescribe them, and the tension is getting worse- have trouble even keeping my head up- have to lay it back on couch to take tension off the muscles, and consciously try to relax the muscles- lots of strained muscles due to constant tension- muscle knots- mostly in neck and shoulders-

Thermal Regulator is broken-

Always cold or too hot- never really comfortable- it's like having flu in summer where you're cold one second, and burning up the next- I get full body cold sweats- get too hot, then too cold- it's crazy- Had my thyroid checked- it's fine- been checked for other endocrine conditions, nothing found wrong

Brain Fog-

Was always a deep thinker- avid reader- now I get confused when reading things that are complicated, or too many words-- I have to now keep re-reading paragraphs because I can't seem to concentrate and lose track of what's being said- Have trouble finding words when speaking as well- that was never me-

Wake up Exhausted

Non refreshing sleep- (might be due to sleep apnea- or worsened by it if I still have it)

Night sweats-

Head to toe soaked in morning- this comes and goes though- and some may be due to my Crohn's disease- but happens even when in remission- so something may be causing it too

Short of breath a lot

When walking up a mountain, I'll very quickly, within 200 yards or so, start to lose my breath, get sweaty, shaky, feel like I'm going to pass out- Sweat will be literally pouring off me- Folks- 80 year old hikers are passing me on these trails- I'm 49 for crying out loud!

Hands HURT in cold-

Even holding a cold soda can hurts- have to put can down- it's very painful- pumping gas in winter is excruciating - Yeah I know, probably Renaud's -

There's more, but can't think right now-

Main complaints are painful muscles that burn all the time- debilitating weakness- takes days to recoup when I overdo it- exercise intolerance that has ruined my life- and cold/hot all the time.

I should mention that I don't have ANY tender points commonly associated with fibro, nor do I have trigger points that go with Chronic fatigue I guess? My other symptoms though seem to all indicate one of the two-

I've said it before, there is something wrong with my muscles, they are either not getting the fuel they need to keep going, OR they are getting enough fuel, but not able to convert it to energy- I've had my oxygen tested during exercise and it's fine- so that's ruled out- Oh, and my muscles will tighten up especially in my calves, when I'm walking, and not release like normal muscles should- Have to sit down, stop walking, rest them in order to keep going without the knotted up muscle pain- I could just keep going, grit teeth and bear it, but I pay for it if I do for a few days-

Post Edited By Moderator (BnotAfraid) : 2/12/2015 9:07:10 AM (GMT-7)

Welcome to the forum

some of what you describe sounds like Raynauds syndrome.

The fact that you have chrones and ostomy issues produces huge amounts of stress.

Limitations of stamina come from medications and illness, I experience this myself. The good new is the muscle has memory and the exercise is accumlative. So 10 mins a day, twice a day if you can, will benefit you!

You don't mention if you are seeing a therapist. I suggest that you consider this. What you are dealing with is very traumatic for you mentally, not only physically.

If you don't want to see a therapist, a support group is a great option. I attend a depression group 1-2 times a week and a abuse survivors group once a month.

Once you are comfortable with the group, it is wonderful to feel the support of people going through the same things as you. Search the net for chrons support near your zip code.

Peace and strength
Trina

Hello Benot-

[[The fact that you have chrones and ostomy issues produces huge amounts of stress.]]

Yeah- like I said, my case is complicated- even the acromegaly I had can cause many of the same type symptoms of fibro/chronic fatigue, or any number of other health issues like neurological issues rheumatism etc-

[[Limitations of stamina come from medications and illness, I experience this myself.]]

Not on meds- I used to be 20 years ago- dangerous ones- but stopped them-

[[What you are dealing with is very traumatic for you mentally, not only physically]]

Meh- doesn't bother me- it's the physical issues that are taking it's toll- I've actually a very positive 'it's meant to be' attitude about the whole issue- as I believe everything is meant for a reason- I appreciate the advice for group support, but really, I'm at peace with my situation- and really am just looking for whatever might help with the symptoms if possible, and to find out what is actually going on- I suspect Chronic fatigue (& Raynauds as well), might be fibro (When I hads my sleep apnea test, I hadn't mentioned I might have possible fibro to doc who did the sleep test, and He told me "You brain waves are usually seen in people who have fibro" Which I thought was interesting- but the problem is I have none of the trigger points that go along with fibro- so I'm not sure it could be fibro?)

[[How is your o2 levels being an asthmatic?]]

Hello- My o2 levels are always good- (I used ot smoke and they were worse at the time but have improved since quitting)

[[Have you taken any supplements such as magnesium and calcium?]]

Yes, I take Magnesium- have to avoid calcium as I get lots of kidney stones 60-80 a year

[[And I may be wrong but have they checked also for MD?]]

MD?

[[I had to fight and fight for mine through many doctors many who just blew me off as either a hypochondriac or a pill seeker.]]

Me too- not so much hypo- but they labeled me ass a 'pill seeker' because when I was on hydrocodone, I felt better, went off them because I didn't like being addicted, then tried to get back on them when pain was bad again-

The last doc I went to was an endocrinologist (As I thought perhaps possible thyroid or parathyroid problem due to symptoms) who said "Hang in there- We'll find out what's going on" He ran some basic tests, the hormone levels showed all fine with a couple being only slightly low- and that was last I heard from him- 8 months ago-

I'm on Medicare so they only run basic tests and never follow up- pretty profitable business for them without having to do too much work- quite a racket if you ask me

Hi ptl

[["volume is turned up on my pain button".....]]

Yup- it's definitely 'turned up' in my case- even pain from cold is turned up- holding a cold soda can for a few minutes is painful- I used to do gold panning in rivers, with ice on the river- hands submerged in ice cold waters- now I can't even hold a cold-ish can of soda- and temps around 40 degrees or so make my hands hurt from the cold-

I've suspected there was 'increased intolerance' to pain for a long time- simply because I literally can't do things like hike that people In their 80's are able to do- I'm leaned against a tree because of pain, while older folks wiz on by me- I should not be feeling this kind of increased pain at my age- something is wrong- something is not functioning correctly- That much is certain

[[I met a woman at the clinic who was in the same boat, but with 4 young children]]

Having children would be the death of me- it would be far too stressful and exhausting for me- that is one thing I had to give up on (marriage and children) thanks to this horrible problem- I get so run down from doing nothing, and when not even experiencing stress, that I can just foresee what would happen with the added stress-

[[My house is chronically messy because I simply do not have what it takes to clean it.]]

Mine too- same reason=- which is another awful thing to have to accept- Others look on us like we're lazy I'm sure- but they don't have to live with the pain and recuperation times that we do- the problem is that whatever is going on is an 'invisible' health issue=- it's not visible to others- so they think we're just being lazy- I often think "Can't you see how exhausted I am" an the answer of course is NO- they can not see that

[[Bringing your medical records helps cut down on the testing and time you need to be there. BUT, in order to get into the fibro/cfs clinic, you have to get a refferal from a doc within Mayo Clinic, and since they are usually booked out over a month in advance, unless you get in on a cancellation, you have to make a second trip. ]]

I'm so tired- so exhausted- so beat down- I have been trying for years an years- going to one specialist after another- all run basic tests, months apart- many visits- and find nothing- I really didn't want my life to be spent running from one doctor to another- living in doctor's office waiting rooms- etc-

I'm resigned (almost at least) to the idea that I'm not meant to know- and that is that- so enjoy life as best I can while I can- I'm still able to hike very short distances, (1/8 to 1/4 mile) most days, and a loner hike once a week or so (1/2 mile to 1 mile)- and recoup for a few days then do shorter ones again for awhile

The3 only problem is now that where I live- lyme's disease is becoming a problem- and lyme disease hangs out in areas I love to hike- Blah!

[[My mind is not strong enough to overcome this, and I want more meds, not less.]]

It's tough- real tough- I believe you have it in you though to 'keep the faith'- I want the meds too- I was on hydrocodone for years- which really helped the muscle pain- then docs got all mental about issuing pain meds- what with feds cracking down on clinics etc- and they stopped me- after I was addicted- I had to convince myself- "Oh well, this issue isn't going to kill me- it'll be awful, but it's not fatal" - I desperately want ot go back on them to relieve the pain- but oh well- Mind strength problems like yours though is tougher than addiction issues- I hope you can beat it well enough-

Hi Nazareth.
After reading all of your symptoms I have to say that we have many of the exact same problems, not all but many. Ive had the basic fatigue problem for the last 30 years, however over the years it was very random and infrequent. However last year it became much worse, much more frequent and affects me in many ways including the mental part you spoke about, thinking, talking etc. It has become almost a daily situation some better than others. I was given several brain tests where they did determine that the neurons were misbehaving.
What particular meds are you on?

tks.
jim r

Nazareth, sounds like my situation. I have worked my way up with GU-formulas.

If you are interested in the more esoterical view on this, check this out:
www.classicalchinesemedicine.org/2014/06/an-ancient-solution-for-modern-diseases-gu-syndrome-and-chronic-inflammatory-diseases-with-autoimmune-complications/

Hi Nazareth, just saw your thread and wanted to reply. I have CF, although my Dr. insists it is only FM. From my research I found that the deciding point for CF was if you had Post Exersional Malaise, or Exercise Intolerance. Those of us who have it know how debilitating it is.

Your symptoms (and many more) are common to CFS.

I took a downward spiral a couple years ago, to the point that I was pretty much couch ridden. The thing that got me back up was identifying, and cutting out, foods that were exasperating the issue. For me it is chocolate, gluten, most other grains, potatoes - including potato chips, ice cream, etc. I didn't drink milk, soda or alcohol, but that would have gone too. I also try not to eat any artificial chemicals, etc. and can tell immediately if I do.

I didn't get rid of all of them at once, it took a while to identify the foods that were hurting me. I am much better but still on the merry-to-round. At least it was a step forward.

If I so much as eat a teaspoon of some of the foods listed above, I will pay.

One thing you can try is to go completely alkaline for two weeks and see if that makes a difference. I did this several years ago. At first I got sicker, but after about 4 or 5 days I started pulling out, and by day 10 I was completely symptom free. Unfortunately my daughter was getting married and I was experimenting with cake recipes and went back to my old ways, but it is something I am working towards as I have seen the results.

I think as our bodies get compromised that we become more and more intolerant to things that used to not bother us, but now our bodies are weak and we have to become a detective to find all the culprits.

Hope this helps

At the risk of sounding like your mother nagging at you.......

Be very careful pushing yourself with the walks, especially if you feel worse after going. Post Exersional Malaise will only get worse if you don't watch it. I watched a video someone posted on one of these forums, wish I could find it. The Dr. was explaining PEM to a group of colleges at a CFS/ME Dr.'s conference. In his studies, those who pushed themselves go worse, some to the point where it took weeks or months to recover, and some who couldn't recover at all.

It sucks not to be able to do much physically, even walking, but it is better than going down and not getting back up. I am still hoping that if we take it easy and work on healing our bodies, eventually we can get some of our mobility back and we won't have to pay for it.

As for your diet. I am not familiar with the diet you have to eat because of Crohn's, but you are eating a highly acidic diet. I cannot eat rice or noodles, or any grains except corn that doesn't make my symptoms worse. And you definitely aren't getting any vitamins in your diet. Is there any way you could start adding more fruits and veggies, even if you have to cook them and cut out the rice and noodles? This might help.

Also, the soda in the morning might be getting you off to a bad start. I did this with my mocha latte's. I felt OK in the morning, then I would drink my mocha latte and down I would go. I finally figured out it was the chocolate that was making me sick. When I quit drinking them, that was my first big step to getting me up off the couch and back into the workforce. It is amazing how much these "foods" are not tolerated by people with our problems.

Just give this some thought please.

Get a igenix test! Look at blood through microscopy. ..22 docs later it was .bart ,rmsf and borellia.! Try doxy ,high dose c...dont give up