HealingWell
Search Close Search
☰

I'm new, could I have Fibromyalgia?

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/29/2009 6:31 PM (GMT 0)

Hello everyone. I have a condition called Interstitial Cystitis and have been posting on an IC forum where someone suggested that I may also have Fibromyalgia. I have never heard of this condition before but after finding your excellent site I am now wondering if this could be the case. I would really appreciate your thoughts as I have an appointment to see my doctor next week about the pain and other symptons I have been experiencing.

I’ll outline my history and try to keep it as brief as possible.

5 years ago diagnosed with IC, I should state that I live in the UK and when diagnosed IC was relatively unheard of in this country so I have had no treatment for it, it is the IC website that has now made me aware of the help available hence my appointment with my GP who with hopefully refer me to a specialist.

As well as the IC I suffer with constant back and neck pain. It is by far at its worse in the mornings when I have difficulty standing up straight when I get out of bed. Sometimes it will go to a constant dull ache throughout the day and I can just about function as normal and other times it will completely disable me. Sometimes it’s like my whole back and neck will go into spasms and I am locked in a hunched over position where I can’t straighten let alone walk. This can also happen if I sit for long periods or take long car journeys. I have definite ‘tender points’ in these areas and also other parts of my body. Sometimes my husband will gently poke me for fun and it will really hurt he can’t understand this and says ‘but I hardly touched you!’ I sometimes have restless legs in bed or my legs will fall asleep before I do if you know what I mean. Last week for no apparent reason my left foot and the toes on that foot really hurt and I could hardly walk. A few months ago my middle finger was really painful and stiff and wouldn’t bend this extended down into my knuckles and hand.

about 15 years ago my eye started twitching and parts of my face which also went numb at times. I had numerous tests including scans and a lumbar puncture to test for MS, a brain tumour and to see if I’d had a stroke. The scans showed some abnormality to one side of my brain but this was inconclusive and it was all put down to stress. I must admit my eye and face tend to twitch far more often if I am over-tired or stressed.

Over the years I have had a lot of trouble with my ears, this October just gone was the last episode when I had labrinitis (excuse spelling) and I kept falling over/loss of balance. My ears constantly hurt and feel like they have an infection when they don’t.

I’ve always had really good vision but tomorrow I’m having my eyes tested because they have definitely failed recently.

My memory has also failed lately, especially my short term memory and I am very forgetful. Also I find myself saying things which just don’t make sense (my husband jokes and says I’m going senile). I will go to say a sentence and completely the wrong words come out, if you know what I mean. Sometimes I'll say something and as soon as I've said it I'll realise what I've said and feel stupid eg the other day we were watching a programme about altitude on TV, we live by the sea and I said to my husband 'how far are we above sea level?' Perhaps this is the menopause (I'm 47)

My sleep is very disturbed but this I put down to my IC and I am getting very fatigued during the day. If I sit down at all within a few minutes I will be asleep.

I suppose the main thing that is bothering me is the constant pain in my back and neck. Originally I thought the back pain must be the IC but as it’s present when I don’t have an IC flare up I’m now thinking I could be wrong, also this wouldn't affect my neck. about 8 years ago for no reason at all my neck completely locked  and I couldn't move my head at all. The pain was excrutiating, I went to hospital but they didn't know what it was, it lasted for about 3 days. My neck hasn't been right since.

Do you think this could be Fibromyalgia or am I reading too much into it?

I would really appreciate your view, thank you for listening and I’m so sorry that I’ve waffled on for so long. It’s just that it’s such a relief to find somewhere that could possibly answer my questions and put my mind at rest. If it could be this I'll mention it to my GP if you don't think it is I'll keep quiet!

Kind regards, Debbie
Posted 1/29/2009 7:34 PM (GMT 0)
Hi, Debbie, and welcome!  Well, from what you just described, it sure does sound like you can add fibromyalgia to your list.  You do need to talk to your doctor, though.  You see, fibromyalgia mimics several other illnesses.  Doctors usually will test you for those other illnesses first to rule them out.  Once they have done that then a diagnosis of fibromyalgia is usually given.  In the US, many use rheumatologists.  I have a board certified Internist as my doctor.

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info all about fibromyalgia including symptoms and another link called What Else Could It Be.  There is a link to some good stretching exercises that could help you right now, too.

 

With fibro, you need to keep moving.  If you sit or lay too much, you will be stiff as a board.  You also need to pace yourself.  If you try to clean your whole home in one day, you will probably pay a price for that.  You will learn what  you can and cannot do because your body will tell you.

 

Moist heat is great for fibro.  Hot showers feel wonderful and many here use a Bed Buddy.  I'm not sure if they have those in the UK but you can make one.  Take a tube sock, fill it 2/3's full of raw long grain rice and then tie a knot at the end.  Voila!  a homemade Bed Buddy!  You can put this in the microwave to heat and it gives off moist heat for about a half an hour.  The moisture is in the rice!

 

I take ibuprofen with food and extra strength Tylenol for my pain and I use malic acid/magnesium supplements for pain and fatigue.  There is a link in the Fibro 101 thread all about the malic acid and how it works in your body.  Also, you might want to have your vitamin D levels checked.  Many with fibro seem to have a vitamin D deficiency.  I know I did and I now take 2,000 IU a day of vitamin D3.  This includes the D3 that is in my calcium supplements, my multiple vitamin, and my D3 supplement.  This is just a thought.....

 

Get checked out and let us know what your doctor has to say.  I'm so glad you joined us, though.  You have come to a good place.  We have wonderful members here that have great ideas to help you live a full and enjoyable life with fibromyalgia.  Read the Fibro 101 thread, read back posts, and ask questions.  We are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 1/29/2009 7:47 PM (GMT 0)

Hello Debbie!

As always Sherrine has given you some great advice.  I don't know anything about IC, but I do know a little about fibro.  Of course I hope you don't have this horrible syndrome, but if you do welcome to our fibro family.  This is a great forum and you'll learn alot from it and Fibro 101.  There isn't a day that goes by that I don't learn something new!!

Take care and warm hugs,

PS.. I get that twitchy eye thing too... verrrrry annoying!!!!!


Posted 1/29/2009 7:51 PM (GMT 0)
Hi Debbie,

I see that Sherrine has filled you in on so much. So there isn't a lot to add. I thought that I would still welcome you to the forum. You really have come to a good place and I think that you will be glad that you came.

There is so much information on the fibro101 thread. And the malic acid supplements and vitamin D3 really do help a lot. Also fish oil is good.

I hope that you are having a wonderful day and I hope that you keep posting.

Hugs, Karen
Posted 1/29/2009 8:38 PM (GMT 0)

Welcome Debbie! It does sound like Fibro, but your dr would be the one to make that determination. On the Fibro 101 that Sherrine talked about, there is a list of symptoms for FMS. Print it out, hi-light the ones that apply to you and bring this to your dr. visit. Yes, definitly talk to your dr. about this. Hopefully, you can start getting some answers and some help for your conditions.

Read over the past posts, they may give you some extra ideas and info and of course questions to bring to your dr.

Also continue to ask questions here and feel free to share any ideas you have w/ us. We all try to help each other get thru this 'fun' so we can live our lives.

God bless.   Alice.

Posted 1/29/2009 9:37 PM (GMT 0)
Just one added thought. The UK has its fair share of Lyme Disease cases. You've spent a lot of time outdoors? Do you remember any tick or spider bites? Bell's palsy is one of the things Lyme can cause, as well as various neck and shoulder pains. And all the chronic fatigue and fibro symptoms. It might be worthwile to see a Dr. that is familiar with tick borne diseases.

Unfortunately, you can't have lab work done to "rule out" Lyme. The Lyme tests are indirect and many people with Lyme are never seropositive. It has to do with your ability to produce certain antibodies. The typical family practice Dr. is not very well able to diagnose Lyme if they've not see other cases of tick borne diseases. Also. the ticks don't necessarily leave one "gift", and there are a number of coinfections that you should be tested for.
Posted 1/29/2009 9:48 PM (GMT 0)
Hi Debbie, welcome to the forum.  You have already received some great advice so I just wanted to welcome you to the forum.  I wish I had found it when I was trying to figure out what was wrong with me.  It is a good place with wonderful, knowledgable people. It is nice to meet you.  Hugs, Denise  

Posted 1/29/2009 10:05 PM (GMT 0)
hi debbie!

you've gotten lots of great tips here, but i wanted to pop in and say hi and welcome to the family!!

your symptoms do sound a lot like fibro, but as others have said, your dr. will have to rule lots of stuff out first. please come here and ask questions, though! there are many great people here who are full of knowledge:-)

welcome again. i look forward to getting to know you!



as a side note-i read this part of rich's post THREE times:

Agmaar said...
Just one added thought. The UK has its fair share of Lyme Disease cases.

and each of the three times i read it as "the UK has its fair share of lyme disease CATS." yes...cats. thank you, fibro brain rolleyes
Posted 1/30/2009 8:40 AM (GMT 0)
Hi there,

I am responding in regards to your IC. I was diagnosed with it 15 years or so ago. The diagnosis was pretty painful. Warning, the next part is graphic! The doctor filled my bladder up with water then inserted a camera and took pictures. The IC leaves little crystals in your bladder, and as I understand it, those little crystals are what cause the pain.

I apologize, but I don't remember the name of the medication that I took for it. And I had to take it for a year or so. I'm really sorry about not remembering the name of the medication.

All the best to you.
Posted 1/30/2009 2:56 PM (GMT 0)
Hi Debbie and Welcome-

Lots of great advice already given and hope you can get this figured out soon. Sounds like you have alot of the symptoms. :(

GamJill
✚ New Topic ✚ Reply