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
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!!!!!
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.
I have: Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ
Meds: Ibuprofen 600mg every 4-6 hours, Cyclobenzaprine 10 mg, Simvastatin 20mg, Citaloram 20mg Melatonin 5mg Sublingual, B12 sublingual, B Complex, Folic Acid, Omega 3
Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren
As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11