[Mrs M]

Hi everyone yes it's me again Mrs M!!!

Just to let you know I've been to rheumy today and he wants me to take Amitriptyline for the pain and lack of sleep. Any info on this would be grateful please

He also wants me to go for physio in the pool? After he'd mentioned all this although he said last week he's keeping lupus in the back of his mind I wanted to know what is going on. He said that it looks like I've got fibromyalgia which I know nothing about? I know you fantastic people out there will hopefully fill me in on this.

Many many thanks xx
Hope you are all well and having a great day.

Mrs M

 

[elisabethm]

Hi Mrs M What dose of amatriptyline has he put you on i am on 150mg at night i have been on them even before i was told i had lupus.They are prescribed for diffrent problems i pesonaly have had no problems with them.I am waiting to go for physio as well.Are you on any other meds Don't know about the fibromyalga some one else will be able to help with that Hope this helps Best Wishes Elisabeth

 

[Mrs M]

Hi Elisabeth

Thanks for your response.

I have been prescribed a much lower dose of 25mg. Do you mind me asking but were you prescribed them for lupus? and have you had any side effects? Rheumy said that I must have somebody with me for the first day I take them as I may feel a little strange and sleepy and that I should'nt drive. He also said that I will probably get dry eyes and mouth due to them which I'm not sure whether I already have or not.

Also in reply to your question I'm not on any other medication other than for my IBS which started almost 1 year ago!

Take care Elisabeth

Mrs M:hehe:

 

[LaraBara]

Hi Mrs. M! Just a quick note on amytripiline (sp?) - I take 50mg a day - but I'm sure to take it at night - about an hour before bedtime. I haven't slept so well in years!

Just a word of caution is all, I love it, it's made a huge difference in my nerve pain. But it does make me very sleepy, so I don't take it during the day.

Good luck, let us know how it works for you...

Lara

 

[Mrs M]

Hi Lara thanks for the tip!

Do you also take it for fibromyalgia and if so have you got any info on the condition?

Hope you're well!

Mrs M

 

[LBH]

Hi Mrs M

Hi Mrs M! Sorry to hear you are hurting with fibro. I wonder why they placed you on that drug instead of Lyrica. Which is a drug they use most for fibro unless you are in a country that does not approve this drug yet or affordabilty for it is an expensive drug! I forgot about that! I have fibro pretty badly and it's very important for those with fibro to get exercise and I find my cheap $50.00 swimming pool in the late evenings feels great. Right when the water is lukewarm. Oh does that feel good! Fibromyalgia cause several tender points on the body. Neckaches, back shoulder aches, Wrist can hurt, elbows and knees can hurt. And if someone grabs you by the shoulder and tries to massage it will even hurt. People with TMJ also have a tendency to have fibro. Irritable bowel syndrome can be a symptom of fibro. i can't take amytriptiline but if it helps you sleep then I would take it! Sleep with fibro is very important.

 

[cemc]

Amitriptylline works in two major ways: at low doses (10 to 75 mg a day) it is very effective in dealing with nerve pain. At higher doses (75 to 150 mg a day) it functions as an antidepressant. If you are having it just for nerve pains, then doses above 75 mg won't give any better effect. Even at the lower doses, it can make you significantly drowsy, and the combination of the drowsiness plus lack of nerve pains combine to give you a really good sleep. It was suggested to me to take the dose in the evening, but at least 12 hours before I wanted to wake up. That way you get the good effects when you want them, and don't stay too drowsy in the morning. It may still affect you, particularly in the first few weeks of taking it, so be very careful about driving or operating machinery (at least in the beginning), as your reaction times may well be much slower.

 

[mamascan]

Hi Mrs. M,
Amyltriptalin aka Elavil has been widely used for years. I started taking it a few months ago, 25mg to start then upped to 50mgs a couple hours before bedtime. I do sleep better than I have in 10 yrs, which is in itself miraculous8). It replaced flexeril and xanax, which lost their effectiveness. I do not feel groggy in the mornings and find I actually feel almost rested even when I get 7 hours of sleep. I haven't been able to sleep that long in years. My norm is still 4-6 hours per night.
Hope this helps. Personally, I love it.

Michelle

 

[LolaLola]

Dear Mrs. M. Quite a number of us have Fibro as well as Lupus , so it is important that you don't just accept a Fibro diagnosis if you feel there is more going on. Docs. are much more willing to diagnose Fibro than Lupus, in my case I would have been just "sent away to play" by the local Docs. if I had not persisted.
X Lola

 

[Mrs M]

Hi to everyone!

Thanks for your great advice it helps so much more to understand things better.

Lola can I just say a big thanks for your advice. I was initially sent to the rheumy because GP thought I had lupus. Rheumy after first visit also said he thought I had onset of lupus but yet blood tests came back ok. Although it was said that some tests couldn't say yes or no to lupus? Having thought I was going down the lupus road and then to be told fibromyalgia I'm really confused

I've looked on net and feel that I may well have symptoms on both sides?

Thanks for listening x

Mrs M

 

[halfpintfl]

Hi Mrs. M, I have fibro., and lupus,(plus a lot more). I was put on Elavil when I was diagnosed with fibro. We started at 25mg. and when I felt no difference, dr. kept up-ing the dose slowly , till finally we got to 100mg.It was given with other drugs to put me to sleep, and, most importantly, to keep me asleep, and it worked. I still use it today. Amytriptoline is a very ease drug, vith very few side effects. Mainly you have to make sure you have someone with you, especially if you are driving, until you know for sure that the dose that you are on, you can handle. A dose too large for you, and mentally you forget where you are or forget where you are going. And that can be dangerous if you are in a car. Give it a try, and let me know please.:wink2:​

 

[sadieone]

Hi Mrs M,

On the note of having fibro instead of lupus, there is a diagnoses that doctors like to give called MCTD (Mixed connective tissue disease) or UCTD (undifferentiated connective tissue disease). These dx's are an overlap of lupus, meaning the are an autoimmune disease that has not fully qualified as "LUPUS" but act like it in many ways with added issues like IBS, GERD, Sjogrens and Raynauds. Diagnoses can be "Mixed" or "Undertermined".
I personally call it lupus because it is easier to say and understand compaired to MCTD or UCTD.
Addressing your amytriptaline, i too was giving 25mg of Amy for my fibro,, i believe i have to have it increased due to continueous leg pain. It does help you sleep very well.
I used to take cymbalta,, and it was great until i started having side effects from the increase in dosages. A bad case of restless leg left me sleepless at night, so i weened myself off and Rhuemy put me on amy,, so far so good.

 

[pottydotty]

Hi Mrs M, I to am on amytriptaline, they were prescribed for fibromyalgia and restless leg syndome, I was put on 25mg to start to be raised to 50mg but found that the 25mg works so have stayed on that dose but always have the option to raise it if necessary. Like you was dx with firbro and they are still looking into lupus but have just been offered planquil that I understand is the first line drug given for lupus or R.A., there is a forum for F.M. sufferers if you google F.M. U.K. forum they give loads of info and a great meeting place for sufferers, I have noticed that a lot of people on here also go on that site.

 

[Lily]

Hi Mrs M

I hope the Ami helps you, it's often used in low doses to help Fibromyalgia as the others have said. It's believed that around 30% of Lupus patients also have Fibromyalgia and it's important to distinguish between the two as the treatments are very different. So hopefully he will follow you closely and see just what it does improve and what you are left with.

It's encouraging that he is keeping Lupus 'in the back of his mind' and hopefully he is going to monitor you and treat your symptoms accordingly.

How are your fingers and toes now, do you feel the steroid injection helped any of those sorts of problems?

He must think that you indeed have something else going on besides the Fibro but just needs to work out exactly what is from what right now. Especially if your tests are coming up negative/inconclusive for Lupus. Also if you don't fit the exact profile of someone with Lupus he needs to use his clinical judgement over time to sort it out. Very frustrating for us though

I just wanted to correct something that Sadie said. UCTD (Undifferentiated Connective Tissue Disease) is the name given to someone who exhibits signs and symptoms of a connective tissue disease but doesn't fit into one particular slot.

MCTD (Mixed Connective Tissue Disease) however is another separate distinct diagnosis with set criteria and with bloods showing high RNP antibodies.

Sometimes doctors use the two terms interchangeably but most good Rheumatologists familiar with the connective tissue diseases know the difference.

In both diagnosis people are treated with Plaquenil as a first line med just as Lupus patients are.

Here's a bit more about the various connective tissue diseases in general:

http://www.arthritis-treatment-and-...ssue-disease-clinical-diagnoses-symptoms.html

Did you ever get copies of your test results? That would be helpful to you in understanding all this and also to make sure he is treating you as he should be. If it's just the AntiDsDNA that came up negative then that doesn't mean you don't have Lupus, although some doctors like it because it makes it more clear cut. However not everyone with Lupus has that antibody.

love
Lily

 

[LolaLola]

Glad it helped, Mrs. M.
Good Luck.
Lola x

 

[Mrs M]

Thankyou so much everyone for your great advice and info.

I've been taking amtriptyle now 4 days and I'm pretty much the same but not gonna give up cos rheumy said it could take a few weeks to kick in!

I take the tablet 1 hour before sleep and boy does it knock me out:lol: But then after a few hours my sleeps disrupted again with the aches and pains ( shouldn't moan though cos a few hours is better than nothing!)
I seem to be not quite with things until at least luch time now which I'm putting down to the tablets:worried:

Hi Lily thanks for your input.

I'm in with GP tomorrow so hopefully gonna get test results for myself. In reply to your question to my fingers and toes well they're not too good
Steroid injection didn't help and to top things off I've now got new nodules appear on my fingers They have started to go really hot and swollen which is pretty uncomfortable!!

Hope you are all well and thankyou for your concern. xxxx

Mrs M

 

[LolaLola]

Lily, Thank you for explaining about MCTD and UCTD. I always thought the two terms were interchangeable.
x Lola

 

[Lily]

Hi Mrs. M,

The Ami should start to settle in for you in 2-4 weeks. 4 weeks is usually the mark where it's effectiveness and side effects/lack of side effects can be judged. That's about when the morning grogginess should be improved because your body should be used to it. If there are any problems they can fiddle with the dosage etc. we are all different in the amount we need. I think for me personally 25mg would knock my socks off :lol: but then I am very sensitive to medications and usually start out low and work my way up.

((((((((((((hugs)))))))))) on your fingers and toes! Often a Pred injection will help short term and they will try it to see if it gives some relief. I wonder what those nodules are from? They are fairly common with things like Rheumatoid Arthritis, do you know if you were tested for that?

I can't remember if you are on one already but have they tried you on anti-inflammatories? If you can take them they may help you a great deal with some of your problems.

Good luck at the GP's and let us know how you get along

love
Lily

 

[Mrs M]

Hi Lily

I've come away from GP's feeling a little bit low
He commented himself that my fingers are still very purple and he also looked at the new nodules but still doesn't understand what's happening!

I've currently been off work for a while now since my injury at the beginning of the year and then all this flared up. I really feel awful at the moment. I have pain in my hands, knees, elbows, constant headache, extreme fatigue and sooo much more and now I have to go for a meeting with occupational health at work? I just feel that I have to convince everyone of how terrible I feel. I so wish I could be back to my old self because it's not just work suffering because I'm off but my family are suffering much more.

I so much would like to wake up and be able to tackle the cleaning and other house chores that I so loved to do ( weird I know) and be all giddy and enthusiastic with my daughter and husband! I think work are under the impression that because I have no diagnosis that I'm ok and just having a good old knees up at home ( I wish).

I hope I've not moaned too much people if so I apologise now ( SORRY).

Also just to say Lily I did get a copy of my blood results and all seems within 'normal range' although slightly confused about the ENA Screen and Lymphocytes results so any help much appreciated.

Right I better let you get on with things now I've probably took up too much of your time already,

Best wishes to all love Mrs M xx

 

[Mrs M]

Lily with all that ranting I forgot to answer your queries:rotfl::rotfl:

It doesn't look like I've been tested for rheumatoid arthritis and I think they're reluctant to give me anti-flammotiries because after my shoulder injury at work they put me on diclofenac and a month later I got the problems with my hands and feet! They said that it could have been that which triggered this off. Although they never got any better when I stopped the tablets but worse and still now new nodules appear?

I'm really bad with medication because it never agrees with me and I'm also allergic to a couple of things.

Thanks for putting up with me

Mrs M xx