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06/19/2009 01:27 AM

not sure

TMM
TMM  
Posts: 34
Member

Hello everyone.

I wonder if anyone can help me out with some info. I have a confirmed dx of Hashimoto disease and PCOS with a possible dx of Sjogren's syndrome and fibromyalgia. I am being treated for the Sjogren's and not fibromyalgia at this time. I tend to think I may have both instead of one or the other. The treatment for the Sjogren's is not helping my pain, and now I have a strange pulsating sensation in my right foot that is keeping me from sleeping. Is this common with fibromyalgia? I have widespread pain it is the worst in my shoulders, neck, face, and head. It changes from the upper to lower body on some days. When it is in my lower body it is aggravating but tolerable. After I have flare ups in my upper body my scalp will actually be sore after the flare up is over. Sjogren's and Hashimoto are both autoimmune diseases which are common with fibromyalgia. Hashimoto is low thyroid and Sjogren's attacks the moisture making glands of the body. (just in case anyone is not familiar). Both of these can cause pain as well, so it is difficult to tell. The Sjogren's is not easy to dx. My tests, including a lip biopsy was not conclusive, but did show inflammation. I'm not getting a straight answer about the fibromyalgia. If I have it I would like to be treated for the pain. Things are getting worse and I need some relief. Thanks for any info.

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06/19/2009 04:08 AM
emendoza23
emendoza23  
Posts: 2221
Senior Member

Welcome TMM, I also suffer with Hashimotos and I have been diagnosed with Fibro. The only thing I can offer for advise is my personal experience of course.

I know to receive a diagnoses of Fibro, all other possibilities illness must be ruled out, that is probably why you have not received confirmation of Fibro at this point. It is true that Hypothyroid disease will cause great discomfort, but that in turn can cause the Fibro. One may be secondary to the other, but they have overlapping symptoms. I do know that if your thyroid ranges are within the new guidelines of .03 to 3.0, then the possibility of Fibro does exist for you. If you are closer to 3.0, then your TSH may still be a little too high for you as an individual, although they are within range.

Also, if you have had all the lab work to rule out RA, Lupus, Mineral Deficiencies, Etc., then you probably also suffer from Fibro. Now, if you do have any other AutoImmune Disease and is properly being treated and you still suffer, then you probably have Fibro as well.

My Hashis is being treated by an Endo and my Fibro by a Phsycologists. I have yet made it to a Rheumy due to the fact it has cost me literally thousands of dollars to get this far..and Rheumy's are not different in how much they charge. So, I am not currently on any Pain Killers, but I am on Lyrica. After $3000 of extensive testing I know I have a Vit D deficiency so I take 50000IU weekly of Vit D2, and have to take it for 6 months. All other tests came back negative, so my Psychologist was able to diagnose me with Fibro.

I also have the pulsating you speak of and the horrible scalp pains after flares and bad headaches. My foot hurts so bad, I walk with a limp most times.

You will need an excellent Rheumy, which is my next step and possibly a pain specialist. Request to try Lyrica, Cymbalta or Savella from your current doctor until they figure everything out, just to see if you see results. Also, Tina here on the forum just started a new medication that is working wonders for her. She was able to change the sheets on her bed for the first time in such a long time.

Just make sure you get all the testing and any procedures out of the way, so you know that all other disorders are taking care of, and then you will know that you also suffer with Fibromayalgia.

I sure hope you feel better soon. You can PM me anytime and we can discuss the Hashis. Also, go to the Thyroid Forum, it is not as busy as this one, but you may learn valuable information there as well.

Love,

Elizabeth

Post edited by: emendoza23, at: 06/19/2009 04:12 AM

Post edited by: emendoza23, at: 06/19/2009 04:17 AM


06/19/2009 04:17 AM
hmccoy
hmccoy  
Posts: 68
Member

Hi welcome to the group!im Heather. ban I ask what hishimoto is. sorry its 6 am and cant sleep again, and i konow i cant spell!hehe


06/19/2009 04:27 AM
emendoza23
emendoza23  
Posts: 2221
Senior Member

Good morning Heather, how are you sweetie?

Hashimotos AutoImmune Thyroiditis is a type of autoimmune thyroid disease in which the immune system attacks and destroys the thyroid gland. The thyroid helps set the rate of metabolism, which is the rate at which the body uses energy. Hashimoto's stops the gland from making enough thyroid hormones for the body to work the way it should.

An autoimmune disease occurs when the body's immune system becomes misdirected and attacks the organs, cells or tissues that it was designed to protect. If autoimmune diseases in general run in your family, you are at a higher risk of developing one yourself.

The symptoms overlap the symptoms of Fibro. They mimic each other in so many ways. It can be ruled out by simple blood tests. Now, you may have both like myself and so many other people leaving you to fight both disorders. There are people here that have both plus additional autoimmune diseases and their quality of life is really hard to maintain.

Heather I hope this helps a little, you know others will be by shortly to fill in the blanks and offer some advise. Until then, I sure hope you are having a great morning sweetie.

Elizabeth

Post edited by: emendoza23, at: 06/19/2009 04:28 AM


06/19/2009 04:37 AM
hmccoy
hmccoy  
Posts: 68
Member

its a bad mornimg for me, i woke up at 5 am, cant sleep again,ahhhhhh.Im going try try to lay down again. hope you arewll.and thanks for the info...I look that up ann webMD i shoulda just did that instead of making you type all that!im sorry!.Have a good day


06/19/2009 05:32 AM
emendoza23
emendoza23  
Posts: 2221
Senior Member

Heather, I went to sleep at 12midnite, awoke at 3am. I am in so much pain this morning from my head to my toes, no headache though, thank the good lord for that one. That is why I am here and write on the forum. The lack of sleep is gnawing at me also, Urggg.

Elizabeth

Post edited by: emendoza23, at: 06/19/2009 05:33 AM


06/19/2009 07:47 AM
TMM
TMM  
Posts: 34
Member

Thank you so much Elizabeth. I see a cardiometabolic specialist for the hashi. He sent me to a rheumy because he suspected fibro. I guess the rheumy couldn't find all the tender points she thought necessary before she started to rule everything out. She is basically going on the fact that my eyes basically have no moisture for the sjogren's dx. She put small pieces of paper in my eyes to test for moisture levels.

I would love to know for sure which one or both dx's I have. The medication for sjogren's is plaquenil, which can cause more damage to my eyes. I will have to begin seeing an opthamologist. The only way to know for sure about the sjogren's is to have another lip biopsy. The rheumy said it may take several of those, if that is what I choose to do. They are pretty painful. She also said she could just treat it without all the lip biopsies.

Nothing seems to be cut and dried with these kinds of autoimmune diseases. I feel I'm on a dangerous drug without proof, and that bothers me.

She did give me some cymbalta samples to use, but after she thought the lip biopsy showed inflammation she said to stop using those and just take the plaquenil. I go back on the 29th to both specialists.

Do you have to take anything besides thyroid hormone replacement for your hashi? I also have to take Crestor. My cholesterol was 301 before I started it. I know that is a symptom of hashi. I get nervous taking all these meds. I have a almost 6 year old to take care of and the diseases and the meds worry me.

I read that you are having a lot of pain today. I hope you feel better soon. I seem to be a little better today, but that pulsing is still thereSad

Thanks again!

Hugs to you

Tara


06/19/2009 08:04 AM
hopefull1
hopefull1  
Posts: 1965
VIP Member

Hi Tara, I have Hashimoto's and Sjogren's as well as the fibro and a host of other garbage. I have been seeing a pain management doctor for my fibro, arthritis and joint disease. His philosophy is that it doesn't really matter which of the conditions is causing the pain, because it needs to be managed regardles. I think it's great that your md is wanting to unravel the mystery but in the meantime you need to feel comfortable. Don't be afraid to talk to your doctors about your level of discomfort and what your quality of life is like when your pain levels aren't controlled. My hashimoto's is under control, and to tell the truth it helps but not a whole lot. Smile After you have been on meds for about 6 months be sure to get your cholesterol rechecked as you most likley won't need the crestor anymore. Keep us posted and be sure to look around and ask questions so we can all get to know you.


06/19/2009 08:09 AM
emendoza23
emendoza23  
Posts: 2221
Senior Member

TMM, when can you resume the Cymbalta? I know sjogren's is a cousin to Hashis among other things. What thyroid meds do you take? I am on .112mcg Levoxyl daily. My Endo will not prescribe generics because he says they are not alway as pure as the brand..That is all I take for the Hashis. You know that the thyroid meds are something your body makes anyway, so I really would not worry about that one.

The plaquenil is what she is probably waiting on before you take Cymbalta. It takes time and titration for plaquenil to help you.

I did look it up and Cymbalta is a interaction drug if taken with plaquenil, so that is why you have to wait on Cymbalta.

You are right about the plaquenil being a drug to watch how you feel and your response while taking it. There are numerous side effects with this medication.

I sure hope you get some relief and as you move forward in your treatment, you find the right drug regimen that fits you as an individual. I am here if you want to talk. I know you will be there for me as well.

Elizabeth


06/19/2009 03:47 PM
TMM
TMM  
Posts: 34
Member

Elizabeth,

I'm not sure about restarting the Cymbalta yet. I don't see my rheumy until the 29th. I have been on the Plaquenil for over 2 months now. That is the time period she gave me to start seeing results from it. So, that's why I'm wondering if I might have the fibro as well. I do take a generic for the hashis. I'm on 75 mcg of levothyroxin. My doc never mentioned anything about the generic before, so maybe I should ask him about that. I have been dx with hashis for about 2 years now. I'm not sure but maybe 2 months isn't enough for me to feel better with the Plaquenil. A trip to the grocery store is doing me in these days. Hopefully I will know more on the 29th. My rheumy didn't mention an interaction with the meds. I guess if I have both I will have to take something besides Cymbalta. Guess I'll find out, hopefully

Unsure

I will be here if you need to talk as well. Thanks a lot.

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