At a loss...

[Preposterous_Ponies]

I’m not really sure where to begin, or even what I’m looking for - advice, sympathy, a kick in the butt, or what but I’ll take what I can get. I suppose I mostly just need to vent…

I have fibromyalgia (FM), as well as fairly severe anxiety and depression. The later two are mostly under control, but when I get bad flare ups of FM, they come creeping back. And lately, the fibro has been bad.

I’m a recent university graduate and I just got a fabulous new job which I really enjoy - I’m on contract, with the possibility of being hired on long term. I am terrified of my fibro - I’m basically just waiting for it to cost me my job. My employers, while wonderful and understanding, don’t know I have fibro. Telling them, to me, would be like basically giving up the possibility of being hired on long term.

I have two horses - one of whom is leased out, the other who is partboarded - and selling either of them is not an option I want to consider. When I ride, it’s basically the only time I enjoy myself. Well, that or being cuddled in bed with my cats.

My life has become: work, barn and rest. I’m okay with this, but it is wearing on me. Thankfully I have a wonderful barn family so I could not show up for weeks and my horses would be 110% fine. I haven’t been to the barn in a few days because I’ve just been too tired, which is likely a large part of the reason I’m feeling so depressed.

Which brings us to today. Touching anything with my hands feels like I’m having razor’s shoved under my fingernails. The Paresthesia (tingling, numb, burning, awfulness) is off the charts; I could rip my skin off. And everything just hurts - not a lot, just a dull background pain that is constant and wearing.

But the worst is that I can’t stay awake. I have had two cups of tea in the last 30 minutes. I’ve started in on my lunch already just to try and give me a bit of energy. I’m listening to 90’s pop music to attempt to wake myself up. And I ENJOY my work. But I just can’t keep my eyes open. I am just exhausted, all the time.

I go to bed around 9, and sleep until about 6:30. I don’t really do anything besides work and riding. I sleep with a plethora of pillows, and have to make the daily choice of sleeping comfortably, or sleeping in a position in a that won’t cause me pain the next day. I sleep with a mouthguard (terrible TMJ), ice packs or heating pads, sleep masks, “standing bandages” (wrapped ankles), and often copious amounts of Tylenol 3’s, which don’t do anything but I’m desperate. I do have sleeping pills, but only use them in extreme cases because they are a) addictive and b) make me feel worse.

I want to go cry into my horse’s mane. I want to go home. I just want to sleep, restfully, for just a few hours.

I have already taken a bunch of sick days (wrecked my ankle dismounting…) and I’ve been at the company for less than two months.

I am terrified I won’t be able to hold down a job. I am terrified I will lose the only pleasure I get, my horses. I am just so scared that FM will destroy me even further. And it sucks.

[Laurierace]

Jingles. Take life as it comes, you already have enough on your plate without worrying about what might happen.

[draftdriver]

I understand the fatigue associated with chronic pain. I used to fall asleep at the wheel while driving to work. I’d fall asleep at my desk (I learned the art of sleeping sitting up, so my naps weren’t quite as noticeable, I hope). I would get home OK, go out to the barn, feed the horses, then collapse into bed, just to start the whole thing over again the next morning at 4:30.

I found that I don’t handle stress well. I also seem to put too much pressure on myself, and my head gets full of the “should be’s” (I should be vaccuuming, I should be mowing the lawn, I should be working the horses more, I should be building a new fence…) you get the idea.

All this to say that I do understand. Do what you can to take unnecessary pressure off yourself. Learn to say ‘no’ to additional unnecessary stressors. Enjoy your horses. Enjoy the invogourating parts of your job, and try to minimize the unenjoyable aspects.

Best wishes.

[Calamber]

Fibromyalgia is a syndrome, not a disease. Have you been tested for Lyme or tick related diseases, biotoxins (mold toxins) or heavy metal poisoning?

[Preposterous_Ponies]

Thanks everyone. I appreciate the support.

[QUOTE=Calamber;7303580]
Fibromyalgia is a syndrome, not a disease. Have you been tested for Lyme or tick related diseases, biotoxins (mold toxins) or heavy metal poisoning?[/QUOTE]

Oh yes. I’ve been passed from doctor to doctor before getting the “You’ve got FM, good luck with that” diagnosis. My family used to joke that I should set up a cot at our doctor’s office. :lol:

Often the response to me asking if I can get another appointment is “Well, you can, but there’s not really any point…” My family GP is very good though - she tries very hard to make sure I am able to cope.

[romewhip]

What are you doing to manage the FM? Do you have any health coverage now or coming up with the job? Are you making sure that you eat properly and take care of yourself with it? What are you doing to manage stress besides sleeping?

I have FM, along with an autoimmune disease of undetermined origin (they can’t figure out if it’s lupus or RA or something else) and I totally understand the pain and fatigue. I have days where if someone gently touched me I’d want to cry from the pain. Relief has come from a combination of things- watching my diet and not eating too much processed food, salt, red meat plus prescription medication and making sure I get proper rest. I’m always hovering on the edge of too many days off, and we don’t have sick days. By managing what I can I am able to work a challenging job, spend time training my sometimes reluctant pony, and even muck stalls. The more time I spend at the barn the less stress I have.

I hope you can find some relief, take a look at your daily routine and see if there is a way to streamline certain aspects like housekeeping and getting ready for work. I like to lay out my clothes the night before, pack my lunch when I am making dinner the night before, and keep housekeeping simple. Let go of the things you cannot manage, take a deep breath and focus on the necessaries- staying healthy for your job, planning your days to maximize energy, and guarding that energy very carefully as a resource.

[Preposterous_Ponies]

[QUOTE=romewhip;7303599]
What are you doing to manage the FM? Do you have any health coverage now or coming up with the job? Are you making sure that you eat properly and take care of yourself with it? What are you doing to manage stress besides sleeping? [/QUOTE]

I’ll admit that I am pretty bad when it comes to this - I’m learning to do this stuff, but often I am just so exhausted that I don’t have the energy to make myself feel better, if that makes sense? While I know (and would rather have) a nice healthy meal, I’m often so tired and sick feeling that all I can force down is junk food. I have gotten better at pacing myself, and I’m learning to push through the pain.

I live with my parents at the moment (saving up cash), and they are a godsend. I bought my horse right before things got REALLY bad. I paid for my mare entirely, but had to stop working because the fibro was out of control. They have been supporting my horse habit for the last couple years. I am now finally able to take over the horse costs. I had benefits under my parents, but having graduated the costs are now on me. No benefits from work, as I’m on a contract - they may come eventually, but I’m not counting on it.

I do have wonderful support from my parents, and while I hate “mooching” off of them, it is thankfully an option (at the very least, I’ll never be without food, meds and shelter).

[beaujolais]

Cymbalta is nice. And, how about an MRI of the cervical spine considering your hand issues?

[romewhip]

Trust me- I know how hard the taking care of yourself is! It sounds so easy, but when you’re driving home exhausted from the barn or work and it’s so simple to just grab fast food and then you don’t have to do anything when you get home.

Do your parents know (really know, not just have an idea know) where you are physically right now? Can they help at all with things like meal planning and getting yourself in remission? If they don’t get it (it’s hard to understand for others as they think you may not look ill) maybe a put it on the table sit-down is a good idea. Let them know that you’re determined to break the cycle, you need help to do it, and you have to get to taking better care of yourself.

[Parrotnutz]

I so understand as I have Fibro. A life saver for me was recently being sent to a doctor who deals with chronic Lyme, fibro, any chronic pain. He explained to me that taking a sleeping aid like ambien does not give you the quality sleep you need…the REM. I am on meds for depression/pain that hep but he added Doxepin which is a very old tricyclic antidepressant that doesn’t really work well for depression but works wonderfully for getting the type of sleep a fibro patient needs. You dosage depends on how you adjust…I only take 10 mgs but can take as much as 40if needed…I have never needed more than ten. It has been a God send…after one month of regular sleep…a solid eight hours I am much more functional. Yes I still have fatigue and pain but not nearly as much. Try and find out if you can get this med. if you are near NJ I can recommend the doc. If u need an ear PM me…I know way too much about Fibro…have had it for years!

[romewhip]

^ +1
Quality of sleep made a big difference for me too. I am lucky in that I can take melatonin with good result. I also use Breathe Right strips to help keep airflow open. I had to spend some time learning how to sleep properly- it’s worth it.

[Come_Shine]

Is there any possibility you have sleep apnea? That might help explain why you’re so tired after a full night’s sleep.

[Preposterous_Ponies]

[QUOTE=sonomacounty;7304050]
Cymbalta is nice. And, how about an MRI of the cervical spine considering your hand issues?[/QUOTE]

I had an MRI of my whole spine - it’s “perfect” apparently. My doctor and I have discussed Cymbalta, but I am hesitant to switch drugs because what I’m on now is okay, and I fear switching will put me back.

@romewhip;7304060

Do your parents know (really know, not just have an idea know) where you are physically right now? Can they help at all with things like meal planning and getting yourself in remission? If they don’t get it (it’s hard to understand for others as they think you may not look ill) maybe a put it on the table sit-down is a good idea. Let them know that you’re determined to break the cycle, you need help to do it, and you have to get to taking better care of yourself.

My dad has a chronic disease that he, realistically, should have died from many times. He definitely gets it, which is great. Of course, he’s one of those wondrous people that persevere regardless of the situation, which actually makes me feel worse sometimes. His disease is definitely worse, and he just deal with it. My disease is relatively manageable, but I often just can’t cope.

My mom understands as much as she can, and is very supportive as well. My dad and I usually feel very sick on the same days (it’s strange!), so my poor mother has to deal with both of us!

@Parrotnutz;7304126

I am on meds for depression/pain that hep but he added Doxepin which is a very old tricyclic antidepressant that doesn’t really work well for depression but works wonderfully for getting the type of sleep a fibro patient needs. You dosage depends on how you adjust…I only take 10 mgs but can take as much as 40if needed…I have never needed more than ten. It has been a God send…after one month of regular sleep…a solid eight hours I am much more functional. Yes I still have fatigue and pain but not nearly as much. Try and find out if you can get this med. if you are near NJ I can recommend the doc. If u need an ear PM me…I know way too much about Fibro…have had it for years!

I am two kinds of anti-depressents, one of which is tricyclic and was prescribed for sleep, the other is for my severe depression and anxiety. The tricyclic meds have been very helpful - I recently reduced the amount, which in hindsight may have been a bad idea.

@Come Shine;7304252

Is there any possibility you have sleep apnea? That might help explain why you’re so tired after a full night’s sleep.

I’m not sure about the sleep apnea - I have never been tested, or anything. It has never really been brought up. I’m actually a champion sleeper in some ways, but it’s the constant pain that is disturbing the cycles.

I read somewhere that there was a theory that patients with chronic pain have poor sleep because their brains never fully “shut down”; the pain signals are always firing, regardless of how relaxed you are. That certainly seems like a possibility.

I woke up this morning with a terrible cold (slept 12 hours!), so that probably explains the flare.

[Come_Shine]

You may want to ask your doctor about having a sleep study done because if it is sleep apnea that wouldn’t be helping the chronic pain. Good luck!

[romewhip]

Cymbalta has a made a huge difference for me, over any other drug. That, combined with meloxicam for inflammation is doing me the most good. There are still days I have to resort to Vicodin, but they are fewer now, like sometimes not even once a month.

For sleep I take melatonin, after a bout of night terrors. Night terrors and bad sleep are often the result of too little of the right kind of sleep, and melatonin helps correct that.

It’s hard to do but one of the best things for the pain is exercise. I’m having a hard time with this as I just had knee surgery, but I’m ready to get back to exercise and feeling better. Even grooming your horse is great exercise, and for me it helps get my mind off the pain.

[CHT]

Have you considered seeing a psychologist? A good one can help you assess and stop the negative “what if’s”. Worry is draining and unproductive, so if you can track what situations trigger the worry and what if’s, and what goes through your head, as well as what stops those negative thoughts, it can help you take control over your negative emotions. Once you have control over your negative emotions you won’t feel so powerless/depressed.

I have also found that the same techniques can be used for pain management.

As for what you are worrying about? You will deal with that when the time comes if it in fact does. Worrying about it now isn’t helping.

Seeing a physiologist has really helped me deal with my recent diagnoses. Other things like mediation may also be a real benefit.

[walkers60]

The neurological symptoms you described are not FM. I know its difficult to keep trying different Doctors but you need a diagnosis. Be careful about admitting to anxiey and/or depression to your medical team .They will stop thinking about a diagnosis and put you in the “neurotic” slot and quit trying to figure out your physical symptoms. I am a provider of health care and believe me, the medical community is still biased against anyone presenting with unusual physical symptoms and emotional issues. They will quit on you.
So start over,new docs, do not show your old records unless you have read them first and edited out anything about your emotional problems.
The medical records are yours and you should get copies from every doctor you have seen and copies of all your lab work.
Don’t give up and if your Doctors don’t know whats wrong thats OK just ask them who to see next. Mayo Clinic in Minn. is pretty good at diagnostic work if all else fails.

[_Teddy]

Please, learn from my mistake. Get a document saying you have xx from your dr KEEP A COPY, bring and discuss with your managers, if their understanding they will get it and it will explain the sick days. I had a supervisor whom was a b!tch and didnt like me(heaven forbid she get off her butt and do her job) i had dr notes ect and stated work limits she tossed them and ignored them/me then told the store manager that i said nothing! They were going to fire me for not disclosing- i had to quit because no matter what she tossed the prof and didnt give a crap.