Fibromyalgia and IC/Painful Bladder Syndrome

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I have been diagnosed with ic recently and during the coming week I have an appointment at a NHS Pain Clinic.  I am at the end of my tether I don't sleep  just moving postion in bed wakes me up because of the pain.  I ache all over but my legs and feet drive me mad.  On top of that is the constant feeling of having a UTI.  Please has anyone got any suggestions I would be grateful for any advice.

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  • Posted

    Hi sue:

    Fibromyalgia is something I have beared for decades. Back in the day about 1970, I started to started to having lots of pain and went to a rheumatologist and he poked me in various parts of my body at certain trigger points and I felt pain ther . At the time he said I might have it. A few years past and the pain just wouldn't go away. I was sick and tired of it and I went to another rheumatologist and she took a series of blood t=sts and my sed rate was quite high as my muscles were inflamed and put me on prednesone for a little over a year. My sed rate went down to eventually 35. Still it over the normal rat%. Please excuse me for the errors in the message as I am using a tablet and types a little flaky. Also it is slow. She put me on Methotextrate a pretty powerful med also used for some cancer pat>ents. This med made me feel sick and took me off it. She was going to put me on Embrel but the cost was too high for me. Then she decided to put me nn Remicade IV. Even more expensive. I had trigger injections which took away the pain for a couple of hours and when the xylocain wore off, the pain came right back? I had to go to a pain doctor who gave me various pain meds. It helped some but still had pain. I had 3 surgeries, loer back, neck and to remove buildup of tissue. Over time other problems set in such as spinal stenosis, peripheral neuropathy, obstructive sleep ap`ea, and others. After so much of this, I was tired of it. So I have a ne%v= stimulator put in. That helped my legs but didn't touch my back. I am not saying ifmy fibromyalgia had nothing to do with it. Doctors don't know what causes fibro and tests are not conclusive. Many doctorss a few years ago thought I was a co~plainer and listed me as a hyperchondriac. Today, they think a little differently sometimes I have pain at night but eventually fall asleep. I do wake u] with pain and stiffness in ythe morning. I feel crapy most of the time and qu>te tired. When i try to do a little work like cleaning, the next day I really suffrt. My spine is a mess and have nerve disease. I justhave to livee it. Fortunately, I dont have UTI but I do have a pr [blem with retension and when havingthe urge to go, the stream is weak. I hope I dont have a prostate problem again as i hade 2 TURPs in the past. Keep your chin up and dont give up. Do some research on these diseases and have questionsfor your doctor. You would be amazed how this helps the doctor will gives well deserved respect to you.. In otherwords you wont be thought of being just a patint but a patient where doctors think of you more. Bye for now and take care.

    mel

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    • Posted

      Hi Mel, same name as my daughter by the way, thanks for replying.  I am always afraid to say that I have looked up my problems online a lot of doctors seem to frown on it.  I think it's the only way you can understand what is going on with your body.  I am struggling at the moment as I am in so much  pain everywhere and the constant feeling of needing the loo which is purely to ease the bladder pain. keeps me awake in the night.  It's funny all these problems started two years ago I went from walking up the stairs normally to practically crawling.  I also started having problemsa  being out in bright sunShine as it really bothered my eyes.  One of the side effects from Fibro is a sensitivity to light which I found very interesting also  like you if I have a busy day it knocks me for six for days.  I told my doctor when I first went to her that I have always loved walking now I get days when my legs feel so heavy and painful it's hard to put one in front of the other.  This has affected my live so much that it makes me feel so sad.  I know there are so many people dealing with so many really nasty illness's that it makes me feel so guilty to think like this but it is hard.

      Sue

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  • Posted

    Hi Hi Sue:

    This tablet sure jumps around doing weird things like when repying to you in the correct reply area, it jumps to somewhere else and chopsoff parts that I have written. So when you start reading it shows something that doesn't make sense. Now I had to continue where it is supposed t be. The problem is that when I am writing, I don't know if I wrote this before but if I did, it is in another reply area. If I mention here twice, I am sorry. I didn't mean to. So here goes. Naming your daughter Mel like my name is very thoughtful. My full name is Melvin. I go by mel for short. 😊 Did you tell your daughter that you are talking to mel? 😁 Your right in saying that many doctors dont like you to find your own diagnosis. I do that too as it is too bad that they dont have the time to really care that much. Your just a other patient. Unfortunately, doctors today are nit the same as they were used to be. The doctors years ago cared more about their patients than today. They also took the time 5o examine you and provide you the best care they can. Todays doctors are quute different and have a different mind set. Partly that is gover ed by the system which is regulated by the insurance co. And the amount of time they devote to each patient. With one exception a d that is a great GP who is from China and really cares at least for me and my wife. He is the old fashioned type who spends time with you and not on the computer which most do. His exams are not just listening to your heart but prodding around where your pain is which he has to poke around. Many questions are asked and explains everything to you and refers you to doctors who can explore further. I never want to lose but who knows. Yes, it is hard, Sue and that is why we are here. At least the people do understand as they are in the same boat as us. The best thing is we can talk about it freely and no one thinks differently. Just the other day I and others in our senior community was helping to paint our new bee room. Where we live is owned by a family and has 200 units in 3 buildings. The owner wanted to start bee hives and asked for volunteers to help with it. Well, anyway we got our bee room to be where we will have our weekly meetings and it was a storage area so we had to re ovate it. You are probably wondering where this going. Last week I helped with the painting, most,y bending over on my knees so I can do the baseboard. The next day I was in so much pain for only doing an hour and a half of work, I suffered for a number of days now. Painting doesnt require immense stress on your body as normal people who don't experience what we have to go through but us it is really tough on our bodies. Just a little bit of work takes a toll on us. It is hard to clean house, sometimes doing the dishes, straighting up a little, organizing your stuff, and dont want to get out of bed but we still do. Of course fibro is painful so is spinal stenosis, nerve damage, psoriaratic arthritis, cronse disease, mengentitis, CIPD, RA, abd other awful diseases which no one should have abd I dont have all that I listed which incidentally I mispelled. But here just reading other peoples diseases and conditions, some worse than I have, which I should feel thankful that I dont have. But we go on because that is what we do. For the 2 months that I started, I have helped people who was so far down and out, lift them up to see more than their pain and to share with others like you are doing. I feel more like an advocate as I feel that I am important here and can make a difference in someone elses lives. That said and I will get off my soapbox and wish you luck and blessings so you will feel better and in a lot less pain. Take care.

    mel

    First of all its nice to know your daughter has the name as me. 😊 I s this n

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    • Posted

      Hi Mel

      Thanks for your really interesting reply.  It certainly does help to be able to chat to people who are experiencing the same problems.  When your aches and pains start your mind starts to go a bit hay wire and you wonder if it is something more serious then you read these replys and it brings you back down and reminds you that is your fibro or any other problem you may be having.  Back about 15 years ago after a operation I had really bad depression and panic attacks and found life very hard.  I was put on all sorts of meds that made me feel like a zombie and bar one of these I stopped taking the others,  I joined a group called Walk Free and going to the weekly meeting helped me more than any meds I was with people who could explain what was happening to me and we supported each other.  And that is what exactly a forum like this does it supports it holds you up  and stops you falling. 

      Take care

      Sue

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