What is wrong with me??

[Micha2]

I wonder if anyone has experienced something similar to me and would greatly appreciate any advice.

In November 2002 I had some sort of infection, a severe sore throat, then a very bad sinus infection which needed to be treated with antibiotics. I had no other flu/cold symptoms. I was signed off work for 2 weeks. The sore throat carried on for several weeks after and I felt unable to cope with my job (I work for a bank as a computer programmer) as I was very tired and also had anxiety attacks. I went to the doctor who did the usual blood tests (anaemia, TSH for thyroid, etc) which all came back negative. He referred me to a counsellor but refused to do any more tests.

Then early 2003 I noticed some burning chest pains. I had a barium x-ray which again did not show anything up, so it wasn't reflux but the specialist still prescribed some medication that stops the stomach producing stomach acid. This had absolutely no effect and I have pain to this day.

I gained 22 pounds last year, I don't overeat, in fact I have very little appetite, and I tried to exercise. I have a greyhound who needs 3 walks a day and a huge garden, so there is plenty of opportunity for me.

In October I started on the Schwarzbein Principle and hoped that my symptoms were related to eating too many carbs and possibly upsetting my hormones (I am 41). I did feel better for a while and had more energy but did not lose any weight. Then I started to get muscle spasms in my upper back and pains in my thighs, arms and shoulders. I have the odd feeling that my muscles don't want to take on any goodness, i.e. good food, exercise, and when I do exercise, they become weak and I don't feel good afterwards.

I can still do things like gardening and walking if it is on a straight surface but get bad muscle pain if I overdo it. By accident I came across the symptoms for Fibromyalgia of which I seem to have many but two chiropractors that I regularly see think I have ME (CFS) and one of them who tested several tender points said that the infection I had in 2002 damaged my muscles.

I used to be physically very strong and never had problems to lose weight, now I feel totally stuck and scared that I am going to stay this way. I am waiting for the results of my saliva adrenal hormone tests and hope they might reveal something and next month I am doing the female hormone tests. I still wish that I have something simple which can be sorted by a pill...

There are people here whose symptoms are a lot worse than mine but it would be so reassuring if I knew that others experience similar symptoms.

What do you think? (Sorry for such a long post)

Michaela

[sknymonkey]

A lot of us here have benefitted from calcium/magneseum suppliments to control muscle aches and spasm. It is good for anyone on a LC diet in general. My doctor also gave me Vit B injections. They last for a couple of months, and took away a lot of misery.

[Micha2]

Sknymonkey, thanks for your suggestion. I have taken calcium/magnesion supplements before but maybe not in big enough doses. I will try them again.

My chiropractor who is treating the pain with acupuncture has referred me back to the doctor to get some antidepressants to break the cycle I am in. Hopefully they will help.

Michaela

[quietone]

Unfortunately, it sounds very much to me as though you have the beginnings of fibro.

For several years before I started having the more acute problems, the only problem I had was what you described. I didn't feel good, my throat hurt and I felt so tired. I only remember so vividly because of all the Christmas parties I either would force myself to go to or refused to go to. I wasn't sick...I just wasn't well.

Just FYI, I also have seasonal affective disorder and have noticed my fibro symptoms are much worse in the winter season and July/August.

My symptoms now are all across the board. But I have had an extreme amount of life changes in the last 5 years and I think that has made everything worse.

A sleep study may help you affirm your diagnosis. I have always felt that my muscles not healing after exertion is a direct relation to not getting healing sleep. And most fibro/CFS patients have a sleep problem. If you can find anything to help you sleep...use it. I can tell now when I have had a restorative sleep the minute I wake up.

I hope this helps. I know it is hard. Sometimes I get so angry about it I could scream. Not fair. But I will say this...and you may have heard it before. Get rid of all the stress you can. I know a lot of women with auto-immune diseases who were in not good relationships at the time they were diagnosed and I don't believe that is just a coincidence. Not just personal...but children...jobs, etc.

Take care.

Cheryl

[Micha2]

Hi Cheryl

Yes, I think you are right. I was wondering if it was Fibro. I hardly ever sleep well, I often wake up from weird dreams or when I hear our dog move. I don't handle any stress at all well. My personal life is finally in order, I have found a wonderful husband, although maybe this is stressful in a way because he is 8 years younger than me and I am worried that I can't keep up with him. I find my job very stressful and I have already reduced my working week from 5 to 4 days, maybe that is still not enough...
Off to the doctor next week to get something to help me sleep!

Take care

Michaela

[adkpam]

My husband has CFIDS, a related disorder, and he finds amytriptyline in a very low dose does wonders for his sleep.
He didn't get a real diagnosis until he saw an endocrnologist at Johns Hopkins. I urge you to find a doctor experienced in fibro. If it is what you have, you need competent medical help to handle it. If it's not, you certainly need to know what it is.

[adkpam]

I also have to add that he takes something called CFS/FM Energy formula from:

http://www.immunesupport.com/

This, and low carbing, has made the most difference in his condition in many years, since medical science is not very up on the subject. But I urge you not to try to self medicate. Move now to get the best medical care you can.

Knowledgeable physicians can be found through this organization:
http://www.cfids.org/

I'm sure there is a fibromyalgia association, I'm just not familiar with them.
So many of your symptoms remind me of his (reflux, tiredness after exertion, fatigue, difficulty concentrating) that I wanted to let you know about this.

[Micha2]

adkpam, yes I wish I could find a competent doctor who knows about fibro and CFS. This does not seem to be so easy here where I live, at least not through the national health and my insurance will only pay if I get a referral from our GP.

Tomorrow I am going to see our new family doctor (after our old one resigned suddenly) but I am not getting my hopes up. I am still waiting for the results of my adrenal stress test hoping that it might reveal something. (I still have the silly idea that I might find one single cause that can be fixed with pills.... quickly).

I am pretty sure though that if I didn't restrict my carbs, I wouldn't be able to carry on working because I'd be asleep all day. So if nothing else at least I have learnt to eat properly!

Michaela

[Micha2]

I have been on amitriptyline for a month now and I have been sleeping better but I am still not able to do a normal day's work. Have been off work since yesterday with back ache and tiredness.

My nutritionist phoned me yesterday to let me know about my adrenal stress test. I have an abnormally high level of cortisol at night which then drops during the day. No wonder I had bad nights!

I am going to see her later in the month to discuss the details and treatment.

I wonder if this could apply to other people here, all those still looking for answers...

All the best to everybody
Michaela

[Zuleikaa]

You might also have some yeast. Yeast can overrun the body when on antibiotics and cause a lot of the symptoms you mention as well. You might want to take some oregano oil for it and see if that improves things. There is a thread on it in supplements.

[quietone]

on what the dr. says is the treatment for the cortisol problem. I have a lot of the symptoms of an adrenal problem..."tired adrenals" is what they say, and supposedly it is from too much cortisol.

I hope the sleep medicine helps you. At least you seem to have a dr. who is willing to work with you! That's great!

[tamij]

I would attach my name to tis orig post if I could--it as if I wrote it --but I was lucky to find a Dr. who would listen(but trust me was not easy task) but I take a natural supplement called Rela-Core per my Dr advice-I did Prozac-Xanex and a multitude of other prescript meds and I am not kinding when I say non-prescript Relacore is the only one that made a diff. it is avail on line--also type in the word cortisol into a search engine on-line and learn a ton about how it affects the body--you have alot of stress in your life --going to school and working full time and this stuff works miracles--good luck to you and keep reaserching for info on your conditions
tamij

[quietone]

Hi, Tamij...

Just wanted to say I tried Relacore. I can't take it. There is something in there that makes my blood pressure go up and makes me very irritable.

But I am glad you found relief from it and hope others on the site will too!

[Micha2]

Hi everybody
Thanks for all your suggestions. Zuleikaa, yes, you might be right about the yeast. Years ago I heard a lecture by Leon Chaitow about candida and I followed the diet and took the recommended supplements. It made me a lot better but I found the diet very difficult to follow although it was only for three months. Maybe it is time to look at this again.

Quietone, yes, thanks, the medication does help me sleep, although it has some side effects (for example it makes you want to eat carbs...) but I can live with them.

Tamij, Relacore sounds very promising. I checked and it looks as if I can get it in the UK. I haven't found any info on what it contains though. Have you got any info on the ingredients?

Michaela

[Karen]

There's a list of ingredients on this website

http://www.4-womenshealth.com/carter-reed/relacore.html

Karen

[Micha2]

Thanks Karen

It sounds too good to be true. The only thing I am not sure about is that it contains DHEA which normally you only get on prescription in the UK. The adrenal stress test I took also tested for DHEA and I don't know the result for this until I meet up with my nutritionist. So I guess I have to wait until I see her in 2 weeks time...

It is all so very frustrating, I cant' lose any weight but lose heart instead. I haven't weighed myself for ages so I don't get even more depressed, my clothes are certainly not any looser..

This morning I had a cup of green tea and now in addition to my backache that stopped me again from sleeping well despite the amitriptyline I feel nauseous, too. Great! Is there light at the end of the tunnel??

Sorry to be so miserable...

Michaela

[Micha2]

Hi everybody

I got my adrenal stress test result today - not as I expected though. My cortisol level in the morning is a bit on the high side, then it dips dramatically and stays low all day. BUT my DHEA is very high (421), well out of the normal range. (Don't think I can take Relacore, what a disappointment...)

Does anyone know what a high level could mean and what to do about it?

[CalpnPat]

Hi, Tamij...

Just wanted to say I tried Relacore. I can't take it. There is something in there that makes my blood pressure go up and makes me very irritable.

But I am glad you found relief from it and hope others on the site will too!
Hi All,
I haven't posted here much, mostly on the cad/calp board, but have had fibro for 17 years, sorry to say. Each time I hear of someone being diagnosed I cringe abit more. So unfair, especially for you younger women with children.
I lost 50 lbs. on calp 4 years ago. I kept that weight off for 3 years, but this past year gained 30 lbs. back...I just got sick of it all...But am back to calp again and
finding its a much slower process of loosing the 2nd time around...
Hi quietone,
Did you ever find out what caused you bp to go up? I just went to that site, I bet its the niacinamide which I believe is niacin which can cause flushing,etc. Isn't it amazing how so many things affect us fibromites so... At one time I was on effexor and I kept arguing with my dr. that it was raising my bp. He would have been happy to put me on a bp medicine I am sure, but I stopped the effexor and my bp went back to normal for me...I couldn't wait to tell him at my next visit. After that, I started seeing a woman dr. and it made a world of difference.

Is anyone having really really weird pains in the outer arms, outer leg areas..I sure wish warmer weather would get here....winter was a killer...

[sunnywey]

Ya- the outside of my right arm aches, burns + throbs. Weird- I could hardly sleep last night. What causes that? Stretching, etc. doesn't help. I haven't pulled a muscle there or anything.I ache all over, but that arm is the worst!

[CalpnPat]

Ya- the outside of my right arm aches, burns + throbs. Weird- I could hardly sleep last night. What causes that? Stretching, etc. doesn't help. I haven't pulled a muscle there or anything.I ache all over, but that arm is the worst!
I was like that the night before, finally got up to take a strong pain killer and of course I am a zombie the next day all day.I wish I knew what causes these pains. I would be famous!!!! I also ache all over all the time but these types of pains seem really concentrated in those areas.. All's I can liken it to is a rubber band that has been completely stretched and is now rotted...hope you sleep better tonight sunnywey!

[sunnywey]

Thanks Calpnpat!
I too got up + took pain killers about 4:30AM when I couldn't stand it anymore, so I am just getting going now. 11:30AM here.I am seeing a Rheumatologist, the end of April, that specializes in fibromyalgia. I have waited since July to see her. She is supposed to be very good. I will let you all know what she says.

[quietone]

I believe it is the ginseng in Relacore that
bothers my blood pressure.

And I agree about the effexor. I take it but
I have to watch the bp. It seems to affect
my bp at different times of the year.

That is weird sunnyvey that you mention
the outside of your right arm. Mine is doing
the exact same thing! It wakes me up with
pain several times during the night. The
outside, right under the shoulder girdle. The
weird thing is, I am still recovering from a
broken shoulder on the left side, and that
doesn't hurt near as badly as the right arm.
Hmmm....

[sunnywey]

quietzone-
I was in a bad car accident 5 yr ago ( that started all this fibro stuff) and I broke 7 ribs on my back left side, and broke my scalula + collar-bone all on my left side. Weird how my right side bothers me more, too.My physio- therepist says that one side compensates for the weakness on the other side, etc. Sounds good + makes sense when he explains it. It's a common thing tho.Stretch your arm up the wall.I keep stretching all day.