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michelle64 posted:
hi everyone my name is michelle and I was diagnosed about 6 years ago. Ive been to every doc in the area that deals with fibro but really have not gotten anywhere. On lots of meds and since December of last year now getting steriod injections in my sore pressure points along with the meds daily. I dont feel that my doc really cares or listens to my complaints but she is better than the other ones that ive seen. I have alot of problems going on and i also have spondilosis and disk disease. At times i cant even wear clothes because it hurts so bad and my pore husband cant touch me without it causing severe pain is anyone else going through this and have advice or information for me???
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fibroinsd responded:
Hi Michelle...glad you found us..but so sorry to hear you are having problems.

There is a section on here, ...under the tips sections...look for the post called members toolbox...it has suggestions of things that might be helpful..

Have you had your level of Vit. D checked? I am sure Mimi will come along soon and let you know how important that is..

And sometimes it just helps to come here and have someone to talk to..we are here to listen..

It sure is frustrating finding the right doctor...I know what you mean....do you go to a Rhumatologist? or an internist.? I know what you mean about the clothes hurting..sometimes even a light necklace will hurt..

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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foreversore responded:
I too have fibro and disc disease. I have to see 3 different doctors to get treated for all of my stuff. My rheumatologist treats only my fibro, My orthopedic spine specialist treats my disc disease and my family doctor treats my Vit D deficiency and my arthritis in my lower body and the edema in my calves, ankles and feet as well as my restless leg syndrome.

i was in much the same boat as you when I tried to get 1 doctor to treat all of my issues. Now that I have it spread out i am getting better treatment and care and all of my docs are part of the same clinic so they can all read my entire chart and see what all I have going on and what all meds and doses I take.

I know what you mean about even clothing hurts to wear. Those are the days that I stay home and wear a very thin light weight nightie and nothing else to try and stay comfy. I had a talk with my hubby, had him read "The Spoon Theory" and he has read up on FM and gone to all of my appointments with me. On my bad days he knows that I am a "hands off kind of person" and on good days he still keeps any touching very gentle. Education for out friends and family members is key so they understand what you are going through. Let them know that you don't want pity, just understanding.

Unfortunately for us it can take many years and lots of trial and error to find the right combination of vitamins, medications and therapies that work for us. My best advice is to keep trying and eventually you will get relief. I am not quite to that point yet but it is getting a little better with each thing we try.
 
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booch007 responded:
Good morning Michelle,

I am glad Cece came bye and told you of the toolbox. It is a valuable post and I hope we never lose it. Please take a peek in there for hints to help the problems you feel, also it will show you we all have those issues.

I am concerned you are getting steroid injections in sore spots? Are you sure it is not Lidocaine into trigger points? Steroids over time will cause tissue damage. I am on my tenth years of Lidocaine usage and I have no fibrotic changes of damage. I did allow Botox in the beginning because I was desperate, but if anything would damage it would be that as a neurotoxin.

I still looks like you have a poor fit for a physician. Can you go to a large teching facility? I use neurology and they care for me wonderfully. I had alot of nerve compression from the muscle triggerpoints and that is how I walked in their door. I also stayed and maybe still am in denial that this is FM, I see it more of Myofascial tissue disorder. I have a bad neck and it yeilding trigger points throught the upper muscles, muscles you can't really fix without these shots.

IF my trigger points leave the muscle tense for a long time...say 3 weeks I will develop a tendonitis...and that will get a steroid if bed or the trigger point can't be released. OUCH it is.

When I am in a flare or have a HOT point....you can't touch the area...I use the shower and HOT HOT water to bring in bloodflow and I use the soap to make me slippery and I massage the area. Over and over and then some SOMBRA lotion (capsacian cream) to help it be more numb and comfortable. Often that with my hydration can break it. BUT there are reall stuck ones at times that I ned to keep pulling out more tools to fix me*.

Being proactive and getting educated in your fight of this ugly mess we are in is priceless.

I use a book called "FM and Chronic Myofascial Pain" a survival manual, by Dr Devin Starlanyl. 19.99 on Amazon.com. Excellent book of how to's.

Good luck, stay here and post we are open 24/7** NancyB
 
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dollbug responded:
Hello michelle and welcome...MiMi in NC. It really stinks to be dealing with the wrath of the dragon, aka FM...doesn't is? I have had it since 2005 and I know exactly what you mean. I think a lot of doctors just do not even know enough about FM to know how to help us. I do not think that it is a matter that they do not care.

I have also had multiple health issues as well. I have had several surgeries to deal with other things. I do know that at one time I was trying to get better and it seemed like nothing that the doctor was doing was actually helping me as well. I do know that I had to get to the root of my other health issues before I actually started feeling better. So perhaps you have something else which needs to be addressed as well.

I tried several different medicines and was not able to find anything which really helped me enough without causing other side effects. I ended up doing my own research and going through a trial and error process to find out the right combination of *tools* which did help me.

I now take vitamins and supplements and do other things as well.

Vitamin D.....has your doctor checked your Vitamin D level yet? If not, then I would encourage you to be sure and ask the doctor to do this. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. It is a simple blood test....but you must ASK the doctor to run it...as it is NOT included in the normal bloodwork that the doctor do. The good thing about this is that it is a *cheap fix*...but you also need to make sure that you get your Vitamin D level within and *normal range and keep it there.

I do hope you will check out the info under *tips* and *resources*....as I am sure you will find some good *tools* to try, that perhaps you have not even thought about. Using a heating pad as needed....Stopain Spray when you have pain that just will not get any better. Taking a hot shower using lavender bath salts right before bedtime so that you can sleep better. Getting enough good sleep is so important for us FMers. Eating right and drinking plenty of water is also a good thing for us. Doing *gentle exercises and/or stretches is also a must for me. Perhaps getting a Mattress Topper might help. Some of us need something to help with the pressure points on our bodies. As for me....I am forced to sleep in a recliner....this allows me to have *less stress/pain on my body*....(I have done this since 2005).

I think a lot of us also have clothes issues. I have found that wearing the Cuddl Duds help me....they are very soft to the touch and comfortable. I have found that I can wear them year round as night clothes. I also limit the time that I wear a bra as well. (only when I go out in public)

I hope that this has provided some things that perhaps you can try. Hang in here with us and I am sure that you will soon find something that will help you cope better.

Learning how to pace, pace and pace even more is important. It does take time to figure this as well though.

There are no quick fixes....everything takes time and effort as everything is indeed a process.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....



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