[Kate*H]

I saw my rheumatologist this morning. I was a bit discouraged when I left. I think it's because I was hoping for some help and encouragment and I didn't get either. My biggest problem right now is trying to get a restful nights sleep. Every night I wake up between 3am and 4am in quite a bit of pain. My hips are killing me ,I have a headache,a sore throat (?? )and my lungs ache. I toss and turn for at least an hour ,sometimes longer and if I do go back to sleep it's in fits and starts till I get up at 7am. Right now I'm on plaquenil and Advil. I have the Advil by my bed and take it as soon as I wake up ,but it doesn't really help much. I was hoping she would give me something a little stronger to help relax me enough to get back to sleep. She refused and told me instead to get up ,don't turn on any lights ,and stand around till i got bored ,then try again. Then she says that on top of the lupus I have fibromyalgia. So I guess I'm feeling a bit discouraged right now. I don't see her again for a year.Shes' the only rheumatologist around ,and she's an hour away. The next one would be 3hours away,so it's hard to get a second opinion. So what do you think? Do I just have to suck it up and live with sleepness nights? Right now I feel like I don't have a choice since she's the only game in town so to speak.So I am going to try it her way for now.

thanks for listening..... Kate

 

[Maia]

I would be disappointed too... or worse downright mad!

For your sleep issue, you may have better luck with your GP given your circumstances. Good quality sleep is so important to managing pain levels - especially if you have fibro. There are medications out there that are cheap that can help with fibro pain as well as sleep (amitriptyline or nortriptyline). There is also the first FDA approved drug to treat fibro names Lyrica. Other people have success with Cymbalta but that can interfere with sleep at first.

You may need to suck it up and get a second opinion somewhere else. Either that or make a phone call to your present rheumy and ask about trying one of the medications I mentioned earlier to help with sleep/fibro. If she won't write you a script for that medication at the appropriate dosage, and your GP won't either, then I'm afraid you have next to no choice but to travel 3 hours to another doctor! You can post in the Find a Doctor section to hopefully get a personal recommendation for someone in the area/state.

I am also very surprised at not prescribing a different NSAID. Ibuprofen/Advil is actually the least recommended one to treat lupus joint pain... You can try Aleve... or ask for a different one at the same time you ask for a fibro drug. You will want to take it at prescription strength daily for at least 3 weeks to know if it will help you or not... which is not the dosage listed on the OTC packages of course.

Good luck - hang in there. There is effective treatment, and you deserve it!

 

[keebler]

(((Kate)))
My rhumey is 90 min. away. It is so worth the drive. I feel like I am getting the right treatment.

I also have a great GP. I was having sleepless nights and he gave me, amitriptyline. It is wonderful I sleep at night now. I get my pain med from him also. It is easier because he is closer. My GP and rhumey work together and that is great.

I would be mad at your rhumey. That is no way to treat you. I would like to see if it helps herto get up and stand long enough to get bored and then try to sleep. No one should be in that much pain.

Take care,
Lyn

 

[Kate*H]

Thanks for the responses. I was a little taken aback when she told me to "stand around till I got bored." It's actually kind of funny I guess., because it seems like such a stupid answer. . but having just been diagnosed in May ,and not knowing what treatments are out there,I guess I let her intimidate me.I know at the time I was thinking " okay ,that seems kind of dumb" ....but she was insistent that their is no magic pill out there that is going to help me ,and I believed her. I could try my GP ,but I'm not sure how that would go over. My GP has RA and see's the same rheumy and thinks she walks on water, so I doubt she'll go behind her back. I would say my best option is driving 3 hours to see someone else. Bummer.....I will check out Dr's in the Santa Barbara area. Anyone on here know of a good one? Glad I'm not alone in thinking that was a stupid answer.

Kate

 

[LolaLola]

It is totally true that you need good quality sleep to improve your Fibro.

Travelling to Doctors is an awful nuisance, especially if you are very sun sensitive,but you may have to do this.
Wishing you all the best,
x Lola

 

[Raglet]

sounds like your rheumie was passing along some information on sleep hygeine in a rather insensitive manner. It is a standard recommendation to get up and do something boring if you are having problem sleeping (eg balance your cheque book or read the warranty on your fridge) but it should have been presented as part of a package rather than just saying 'stand around until you feel bored'. The idea is not to do anything interesting or stimulating that will further awaken your brain.

Also, if pain is waking you you may need more treatment for your lupus. Do you have a gp that you could see who may be able to help out ? Driving 3 hours is an awfully long way to see a doctor, I think that would likely be outside what was do-able for me.

Drugs like amitryptaline (I take tofranil, same class of drugs) can be really helpful for pain and sleeping, you may want to check this out.

hth

raglet

 

[scrapperjen]

I have learned to truly despise doctors that dismiss. It has happened far too often.

How about a sleep study? That was recommended to me and I'm considering it. I tried amitriptyline with absolutely no success. In fact, I slept worse with it. I am now on cyclobenzapine for fibro and I'll admit that I sleep better, but not well yet. I still wake up several times at night. I've been told by 2 drs that I possibly may have RLS.

As for the sore throat -- are you a mouth-breather? Sometimes that can make a throat sore. Especially if it's dry where you are. It's winter here, so it's very dry.

I wish for you a good night sleep. Sleepless nights are awful.

 

[BigSis]

Hey Kate,
I really believe sleep disturbance is a symptom of lupus and definately of fibro and it should be given the same respect as any other symptom. I think it can go way beyond simple 'sleep hygeine' to the point where medicaton is necessary.
Sleeplessnes contributes to headaches fatigue and depression which lupies can suffer from anyway so it needs sorting.
My Gp prescribed zopiclone (I forget the american name) which I was really reluctant to take. However I did and it helped. I only took it a few times and it seemed to knock me back into a better sleeping pattern. I also know its there if I get desparate which helps.
I hope you get some sympathetic help soon

 

[Annie7447]

I have terrible problems with sleep either the pain keeps me awake or the asthma ro nothing can keep me awake it is no swings and roundabouts here it is full blown rollercoasters.

Sleep clinic are brill I find when my sleep has been so bbad they send me it's normally in time for the massive change and on one occasion they had to come in and check because I was beeping at lack of REM movement...explain that one hehehe, that time I'd spent three days in a ward before they decided it was so bad they would send me to the clinic, they rang the ward the next day and said I had gone into hibernation state, what were they talking about?

I find that if I cant sleep I will just egt up and do something. sometimes a little exersice can help for me sometimes its just a lavender bath or maybe i will hoover or on a glorious night i may even take the dog out for a bit. just slow and gentle and only for a few minutes some times is enough.

I agree with the Advil thing I cant take brufen aspirin based things due to my asthma but I do find that the use of devil's claw can help but i guess you should run this past your doc first. I eat quite a lot of porridge cos I read oats are good too and of course rescue remedy for when I get bumps and bangs.

good luck

 

[Clare.T]

Kate it is too bad that your nearest lupus doctor should be be so uncaring to the point of negligence. Everybody who knows anything about the disease knows that the sleep disturbances caused by fibro need medical treatment as much as the lupus does. There is a variety of management techniques and complementary therapies that can help but not with the basic problem.
With appointments a year apart it seems to be that you have as good as no reliable care so I hope you will be able to manage whatever it takes to find a competent doctor. Ideally one who will take phone calls since you have so far to travel.
There are a number of lupus related conditions that would contraindicate the use of devil's claw as well as medicines that it could interact with. Most lupus doctors know little about natural remedies and there is very little known for sure about natural remedies. So doctors usually advise against them for professional reasons and liability concerns.

If anybody decides to self treat they need to know how their lupus is affecting them and thoroughly research on a variety of reliable sites to see what possible problems the herbal might cause ( blood thinning, gastric problems for example). Reliable sites are mostly ones that are not selling alternatives.

About the zopliclone

(pronunciation perhaps IPA: /ˈzɒpɪkloʊn/) sold as Imovane and Zimovane in Europe, and as the eszopiclone analogue Lunesta in North America

(Wiki)

Let us know how you get on Kate

Good luck
Clare

 

[acard]

Hi Kate,
You need to find help because your body needs the rest to heal itself.
I have MAJOR issues with sleeping and I hate it. I seem to become immuned to the medications after awhile, so that makes it hard.
I think your rheumy is absolutely being negligent and if you can I would tell her how you feel and what you expect from her as your dr. She works for you. There is no reason to suffer!!!!


Good Luck & Take Care,
Becca