Fibromyalgia

[tryinghard]

Long story..but I will try and make it short.

My mom has had it for 40 plus years..well before it was a diagnosis. (and I know some doctors still will not recognize it)

I have had symptoms for the last eight years that come and go. At times so bad I can barely make it through the day. I have been tested twice (MRI) for MS but both times there is no sign at all.

After doing a lot of online research this weekend (because I feel so bad I can barely move) I am convinced it is fibromyalgia.

Do any of you have it? If you do, what medication do you take? Does it work? What kind of a doctor diagnosis'd you. I brought it up to my family practiioner a few times but she doesn't acknowledge my observation.

 

[susiestar]

Oh boy do I have it. It really stinks. I am sorry that you are suffering, and it is probably fibro as far as you can tell.

I also have a strange form of psoriatic arthritis, so I am on a LOT of medications:

humira (tnf inhibitor, a shot every 2 weeks I give myself), various pain patches, pain medications, lyrica, lunesta/ambien CR, muscle relaxer, and some other things for side effects of some medications.

Hope you feel better soon - you really are going to have to find a doctor to help with this.

Susie

 

[nvts]

My sister is still working toward add'l diagnosis', but right now the primary is fibromyalgia.

She's had all the CAT scans, mri's, etc. that you can go through. Once the neurologist "for now" ruled out MS, a rhumatologist diagnosed fibromyalgia.

She's taking lyrica, an antidepressant, anti-inflamatories, countless vitamins, and supplements.

She's been in pretty rough shape over the winter, but as the weather is warming up, she seems to be getting over the hump.

The most frustrating thing for her is her emorie loss and the fact that no one believes her! (except me the always "perfect" sister - lol!). The other is that she can never plan anything because she may be in too much pain.

Good luck getting a diagnosis!

Beth

 

[Nomad]

I have great issues with memory too and the fact that I take a tiny bit of Topamax for my migraines makes matters worse.
I take a baby dosage of Ritalin and this has helped me.
I also take a lot of vitamins....the B vitamins seem to be of help as well as getting in moderate exercise (when do-able) and rest. Some people swear that Acetyl L-Carnitine (from health food store) helps. Fortunately, my body aches are not usually terrible and usually Naproxen does the trick.

To help witih memory... I am trying to write things down. Lately, when I meet folks...I email myself their names so that I can check my email before seeing them again. HOw is that for "different?" Folks freak out when I forget their name and ASSUME I have "attitude." When I tell them that I am struggling with memory issues, some of them look at me like I am making this up or exaggerating. However, since my memory worsened noticeably since taking Topamax...and I have also noticed that I seem to struggle in general more than most women my age, I don't think that is the case. It does BUG me that folks are so skeptical and what is doubly odd is that they are skeptical over really silly things.

 

[tryinghard]

Susiestar and nvts,

Thanks..

Susie,

What kind of a doctor diagnosis'd you and give you the medicines you listed. Does anything seem to help better than the others?

Nvts,

OMG, the memory is the worst! I am so tired of my family getting angry with me because I forget. I do not mean to, and it upsets me. I really wish they would understand.

I no longer complain about not feeling well because no one in my home cares or understands. They want me to continue to do everything I have been and I feel like they think I am making up excuses. I told my husband last night that I wish for one day he felt like me..then he would understand.

 

[tryinghard]

Nomad,

Yes, that is me too. The memory thing upsets me greatly...and I am often at a loss for words. I stop mid sentence becaue my mind cannot find the right word to say. This drives my family crazy....

Only if you are going through it do you understand...

 

[susiestar]

I am truly blessed. I have a primary care doctor who totally "gets" what I am dealing with. If I need her to, SHE will prescribe the painmeds, AT the doses the rheumy has me on. Her nurse will not give her messages, but when she DOES get them (I email her, the nurse does not check her emails) she is great. she is also great when I see her. She just has a hard time with getting good nurses. This nurse is much better than the last one.

I also see a rheumatologist. He is amazing. Could NOT care less about the DEA pressuring docs not to give pain medications. He has a similar condition, and knows we are in real pain. So he treats us, with dignity and respect. He is gently, knowledgeable, and very very thorough. And he NEVER assumes you are with-o pain. He can tell from how your body reacts to his very gently prodding areas, that it hurts.

Lyrica and humira help. I think they are problem worth a try. 1 at a time, of course. But you also need some real pain medications and some muscle relaxers. And if you have sleep problems get some medications for that. If you are not sleeping well, you CAN'T get better.

Susie

 

[tryinghard]

Thanks, that is very helpful.

I am just starting to having sleeping problems. I am waking up 5-10 times a night. I am someone who needs 9-10 hours deep sleep any way...so it is definitely making matters worse.

You know...as I am getting older it is amazing how much I now realize.

1. My mom really was in pain with Fibromyalgia and I blew her off (just like my family is doing to me now)
2. My mom dealt with my difficult child brother and it drove her into a deep depression. (ummm...starting to happen to me after 12 years of dealing with my difficult child)
3. My mom desperately tried to help my brother with his learning disabilities and spent a TON of money on testing and tutors (ditto on my end)
4. My mom use to be a happy positive person but turned into a very negative person when I was in High School. (My 17 year old easy child told me I am always unhappy...she remembers that I use to be happy)

You know what I realized last night....I am turning into my Mother!

I sure hope my easy child daughter never has to walk in the shoes my mother and I have had to walk in.....

 

[Abbey]

You know what I realized last night....I am turning into my Mother!

That's always a scary thought. I'm much the same. Who would have thought.

Abbey

 

[Nomad]

I forgot to mention (how funny when you think about it) that some docs will give their Fibro patients Provigil to help with severe fatigue. It also helps a little with memory issues.

 

[DammitJanet]

I have fibro long with degenerative joint disease. To put it mildly, it inhales deeply.

I was originally diagnosed with the fibro in 1999, two years after a fairly bad auto accident where my car was totaled. I spent those two years going from doctor to doctor getting tons of tests that only showed the joint disease and that was thought to be mild. That was proved wrong after a knee arthroscopy.

I was originally diagnosed by a pain doctor but have been being treated by my primary doctor for years now. I have had a few short times where I felt somewhat better but it has always returned with a vengeance. I take topamax, lamictal...which while being for my bipolar also seem to help somewhat the fibro...along with muscle relaxers, sleep medication and klonopin. I tried lyrica but it caused me so many bad side effects I had to go off it. There are many days I cant tell where the pain ends from the joint disease and where the fibro picks up. Like I said, it inhales deeply.

 

[susiestar]

Janet, I am with you on the "inhales deeply". I also don't know where the arthritis ends and the fibro picks up the pain. My rheumy thinks there is something else going on, but as yet can't figure out what besides the thyroid and vit D deficiency.

Anyone with these problems should be checked for vitamin B & D deficiency. Calcium and bone density should also be checked regularly. I am having some luck with Vit D3 instead of Vit D2 or 1. I take zofran or phenergan about an hour before I take it. My body doesn't much like it, but it tolerates it a little bit.

Pain docs can be helpful IF you can get in to see them. They often require you to sign an agreement to ONLY get prescriptions through them and ONLY have them filled at ONE pharmacy. You can pick your pharmacy, but they check and if they just THINK you went to a different one, they WILL drop you.

I had the ONLY doctor who specialized in pain in our town see me ONCE and write "DRUG ADDICT - DO NOT TREAT" in big letters across the page as I sat there telling him the problems. Because of this I have NOT been able to get in to a pain doctor office anywhere in my state. They look to see what my insurance has paid for, and somehow this docs name comes up in their records. I never mention it. Have had NO luck in getting him to change this - though I am NOT an addict.

I did have the main pain doctor practice in the city do my steroid injection before surgery. This is the injection that resulted in a major migraine type headache for WEEKS. The doctor himself said I should be treated by him, asked why I wasn't. I told him flat out that his staff called me an addict and refused to even look at records, much less give me an appointment. He apologized and said they would treat me if I wanted. I said lets do the shot and see how that goes,then I would decide. Well, they refused to even talk to me after the first call about the headache. And, they were incredibly RUDE. So I sent the doctor a letter and won't go back.

If you can see a GOOD pain doctor, go for it. Otherwise, a compassionate rheumatologist is a great choice. Sometimes a neurologist will treat fibro well, because it is a disorder of the central nervous system. mostly they don't want to be bothered, in my experience.

There are some websites with lists of docs that have treated fibro patients well. If I can find it I will post it. That is where I found my doctor. His partner was listed, but she has been ill and quit taking patients. So I gambled on my doctor. he is abso wonderful.

Anyone in OK, Pm me and I will give you the names of the docs I see that are great with fibro.

Susie