Terrible Fatigue

[gasparama]

I pm'ed benzmum about my experience and remedy for extreme fatigue and she suggested that I add it to the forum. So FWIW, I'm wondering if you might have hypothyroidism. I have that problem and am treated by a doctor who won't do a complete thyroid panel, so until I have the time to find another doctor, I'm pretty much self-treating. After taking Synthroid for several years, the dosage has been raised twice within the last year. In the spring, I began to experience horrible, dragging fatigue which was chalked up to recovery from surgery and other health problems. In June, after poor lab results and an increased dosage of the Synthroid, the fatigue got worse which was attributed to radiation therapy which can really make one drag around. But the fatigue only got worse after the effects of the radiation should have been gone. I started doing a lot of internet reading about the topic and came to the conclusion that I was probably iodine deficient and purchased a supplement. Amazingly, within three days there was an improvement in my energy level. And I continue to feel better. The fatigue was not due to problems with CPAP therapy. There are doctors who are able to think and treat "outside the box", and who are prescribing iodine for fibromyalgia. There is some controversy about dosage and potential thyroid burn out. However, they may be unfounded. It might pay you to investigate this subject, and I'll be happy to send links to some very informative sites.

It may be hard to find a useful doctor in my small city. My next step is to contact a compounding pharmacist to see if there are any doctors who are prescribing natural thyroid hormones because they would more than likely be knowledgeable about the roll of iodine in thyroid and nerve receptor health.

[benzmum]

Gasparama, I remember learning that iodine is important for proper thyroid function - perhaps you already know this. Back "in the olden days," people with goiter / thyroid dysfunction would get large swellings on there throat area. Then they discovered that treating them with iodine fixed their thymus (Is that right?) and the swelling went down. They then began adding iodine to refined salt that was sold for food, I guess because it didn't contain iodine like sea salt does. Don't quote me on this, but that's how I remember what I learned about the thyroid and iodine.

I'd love to think it worked for fibromyalgia as well, but I doubt it. I will, however, ask my fibro. specialist when I get in to see him. There's a family history of thyroid dysfunction, but I was recently tested and found to be functioning normally. However, I'll be talking to my gp on Thursday to see what her take is on this fatigue - I'm going to be firing off in all directions: seeing a respirologist with 17 years experience working with sleep disorders, talking to my gp, and also making an appointment to see my fibromyalgia specialist. I was feeling great this morning after a good sleep, but the debilitating fatigue hit me again this afternoon. So I'm not out of the woods and I'm bound and determined to find out what's going on! Meanwhile, I'm back in insomnia-land....

[gasparama]

I understand the need to attack this problem, so it's heartening to see that you are being so aggressive about it. The fatigue embarrassed me badly because I had become useless. It wasn't painful, and I didn't feel sick. But it was difficult to get to sleep. There is quite a bit of info. on the net about iodine and fibromyalgia which seemed to show up with the low thyroid info. I've another friend who suffers from fibromyalgia and the fatigue can be pretty devastating for her, also. Anyway, I'll be checking this thread to see what you discover.

[benzmum]

Well, I've seen the new respiratory tech plus my gp. Apparently my mask is fitting me well, my leaks are under control and my AHI has been looking good for the past week. I mentioned feeling my throat close when I'm dozing, even when I'm on cpap, and she said I should try bumping up my pressure from 8 to 10 to see if it made a difference.... Although, I wonder what difference it'll make if my AHI and leaks are fine. I'm to do an oximetry next week to double-check oxygen levels, but my oximetry's been good as long as I've had the cpap equipment. My general practitioner today said she's referring me back to the sleep doctor to discuss this whole thing with the recent debilitating fatigue. That'll be fun, because the sleep doctor's a very busy woman and I don't feel at ease in her office - i.e., I don't feel I can sit back and just have a relaxed discussion about all the possibilities! But I'll prepare a long list of questions which I'll hand to her when I walk in her office and we'll see how that goes (learned that trick from the gp of my youth). Meanwhile, I'll get on the phone to my fibromyalgia specialist and see if I can get in to see him.

I slept well again last night - this time about 7 SOLID hours of sleep - but I used Gabapentin in order to do so. My doctor today said that this was NOT a good idea because, worst case scenario, 900 mg Gabapentin could stop me breathing (well, I can think of worse ways to go ). But she was adamant that I stop doing that and, as I said before, it won't work much longer anyhow because of the tolerance factor. So I'm not recommending that others adopt my strategy. In fact, after taking the G. last night, it took me about 3 hours to get to sleep, and then with the addition of zopiclone. Now, it's getting out of hand when you need to take numerous sedating drugs in order to fall asleep.

Anyhow, it's my bedtime and I've been so-0h tired agin since early evening. Oh, another thing I learned yesterday was that there's a strong correlation between people with fibromyalgia and sleep apnea. Who knew? Gasparama, I will read what I can about iodine and FM - thanks for that.

[gasparama]

Without checking the articles that I've read, this could be all wrong, but it may be that there is a high incidence of low thyroid and FM together. You have a healthy thyroid, so I know that isn't your problem. But I find all this to be interesting.
Why does sleep have to be so complicated? It's like oxygen. We've got to have it.

[wearysoul]

Even if your thyroid gland is healthy and your test results are normal, you may want to check out Dr. Lowe's web site: http://www.drlowe.com.

According to Dr. Lowe, even if your test results are normal, you may still be hypometabolic. That state can cause many symptoms (including fibromyalgia). Here is an interesting link:

http://www.drlowe.com/jcl/comentry/brea ... oblems.htm

wearysoul

[gasparama]

Thanks, weary for posting this site. I'm going to spend some more time reading it after house guest leave in a few days. I've been doing a lot of reading about the hypothyroid problem. My doctors order only the TSH and the freeT4 which really tell very little. My TSH was quite high, so the Synthroid dosage was raised, and that did nothing for the all consuming fatigue. It seems that it is difficult to find a doctor who will treat the symptoms of hypothyroid instead of just the lab results. My next step is to talk with a compounding pharmacist to see what docs in town are prescribing natural thyroid hormones and maybe even the iodine. I'm really hoping benzmum gets the help she needs from her doctors. To me, the exhaustion for no apparent reason is debilitating.

[benzmum]

Just to report in, I've been struggling with the "terrible fatigue" again for the past few days. I haven't slept wonderfully (probably due to the painkillers I've had to take at bedtime the past few nights), but I've been getting more consistent hours so I haven't felt as devastated in the morning. But I still seem to lose all stamina about mid-day to mid-afternoon. Today wasn't so bad with the fatigue, and I'm going to assume it's because of my "dragon bowl" for lunch. I've been watching what happens after I eat these days, and there seems to be a pattern where I feel fatigue actually lift after I eat a salad that consists of the following ingredients: basmati rice, cabbage, carrot, sunflower seeds, sesame seeds, pumpkin seeds - sometimes with almonds or shredded raw beet - and with a dressing of Hemp Seed oil with Braggs (unfermented soy sauce). I'd like to think it will work infallibly, but I suspect it only helps when I haven't got a really good reason to be exhausted.

The latest news is my leak, AHI, AI, and HI data is consistently good since I switched to the Liberty, plus I'm being referred to a dental specialist to explore the possibility of an oral appliance (please, God ). I have an appointment with a fibromyalgia specialist in a little over a week, and will see a new physio regarding my painful shoulder this Tuesday. So time will tell. If I learn anything new, I'll report in again.

Sleep well, my friends.

[gasparama]

Are the painkillers for the shoulder? Pain can really drain you of energy. But I suspect that you have something else going on. It will be good to read what your fibromyalgia doctor says. My friend who has that also says that it can make her exhausted.

Thank you for updating us. As a fellow exhaustion sufferer, this thread is interesting.

[benzmum]

Lesson: never do the downward dog yoga pose when you're at risk of lymphedema and you also have fibromyalgia!

[gasparama]

Ouch?!