Symptoms getting worse

General
1

I am rather frightened as I write this. A lot of the minor symptoms that have bugged me over time have decided to get a lot worse recently and are not hurting all the time. My hips keep popping slightly and it is agonising. It wakes me up when it happens at night and I scream in the day. There seems to be no reason for it. My knees seem to want to give way more and more often with no pattern as to when they want to go... they also seem to be sticking from time to time and there is nothing I can do to unstick them again. My back and neck pain is a lot worse... at times I am sure that there is some damage to my spine simply because of the amount of pain and the associated nerve problems it is causing from time to time... things like weakness and a need to pee really urgently.

My weight is going up and up despite exercising more and eating healthier. The doctor has referred me to a dietician to help with this but that makes me feel ashamed of myself. I am scared to keep approaching the doctor with new symptoms because I am frightened they will get fed up and tell me things are all in my head, or worse still accuse me of making it up entirely to get medication. I am making do with the medication I am on... but it is not nice... the pain is so agonising I am needing to take breakthrough pain relief more and more often. I do not know what to do any more. The pain clinic have so far ignored 32 calls from me and one letter asking for them to make me the follow up appointment that they should have made me in May.

On a more positive note I have sent a few nice things to people and they are sending me nice things as well which is a plus point. Anyone interested in being a swap buddy please message me on here and I will arrange something to be sent for you.

Hope you are all ok. Do not forget that I am updating my photo account regularly on Flickr. Click here to see the photos if you are interested. I am going through my mobile (cell) phone and sorting the images on that so that there are more to upload.

Keep in touch with me because I love and miss you all.

Mikexx

2

Mike, I would strongly suggest that you go to see your doctor about these troubling symptom changes.

3

I will do... the problem is I am scared of them thinking I am just being awkward... I feel I have been there too much already if that makes sense? xx

4

Hi Mike,

Am sorry you're feeling rough and worried at the moment, my knee's and hip's click, grate and hurt, have you had yours x-rayed at all ?

Mine were, mind you as with a lot of fibro tests the x-rays revealed nothing!!!

I too would see your GP, we have a chronic condition, that requires frequent visits to a GP at times, it's not like an acute infection or something that will resolve in a week or so.

Don't feel awkward, you're needs are just as important as others with chronic diseases, like heart disease, diabetes, asthma etc. Leaving things too long make them harder to treat.

Take care, thinking of you,

Love Lucy xx

5

I have not had them xrayed in a long time. I was told to get myself referred to a rheumatologist but when they phoned and asked me if I wanted an appointment I said no :(... I was scared they would be annoyed with me. I guess I really should go back and see them :(

xx

6

Mike I would strongly suggest you go to the doctor. This is not going to get better without help. I would also make that appointment with the rheumy doctor. Is their another pain clinic you could go to it sounds like your meds need to be adjusted. I love your pictures and always look forward to them. Keep us posted.

7

There is only the one pain clinic anywhere near here... it is complicated because we are NHS Highland and Islands and the mainland near us is NHS Greater Glasgow and Clyde so since they are different health boards any patients sent between them needs to be agreed. The pain clinic is on the mainland so the health board here pays for me to be treated there... it is complicated if another area gets involved as well lol.

I will make an appointment at the doctor... I am worried I will chicken out and not say what I want to when I get there though :( xx

8

At some of my appointments I think I might not tell them everything so I find it easier to write down how I feel and let them read it instead, then talk things through......just an idea that I find useful. xx

9

Mike, that is your personal challenge.......to be sure that you tell your doctor about all these things. If you are afraid you might not say what you really want to say, might I suggest that you write it all down before hand and take that with you.

Mike, you are not the only person who has this problem of not saying what you really want to say and they have written it down on paper and taken that with them to their doctor visits.

This should allow you to be more relaxed when you go to your doctor appointment. Remember your doctor can only help you if you tell him everything.

10

hi mike .I was sad to read of your condition and i can relate very well. The only thing is that i have finally found a good medical doctor whom i can trust, one who believes me and one that respects me as well. He has been my doc for about 17 years now. I found a neuro doc about 9 months ago. I am working with him to find meds to combat pain and also for gran mal seizures that came after i came down with severe case of cfids( chronic fatigue immune dysfunction syndrome) In case you dont know this is a complex, debilitating,multi symptomed illness. I have chronic pain from a variety of causes. After all these (27) years i found a neurologist whom i like and also have trust in him as well. I think if you can find at least one doc who will get to know you well enough and that you can trust and one who respects you will be in a better place. It is really appalling to me that you placed 32 calls to a pain clinic without a return call. I would urge you if it is possible to find new medical staff. I will keep you in my prayers.. sending you love as well.

ps i agree with rachel about writing all your concerns down and let the doctor know. if you still dont feel like you are getting anywhere then it may be time to look for a new doc.. all the best xoxooxxo

11

Oh Mike. I'm so sorry. That pain clinic is very negligent and should be turned it to somebody. Did your regular MD refer you to them? Maybe your MD's office could get them going for you.

I don't understand this disorder at all. It seems that after awhile it changes symptoms and can get worse and more painful. When I think back, one year at a time, I know it does change. But, I've also gone through times when it gets better. I don't know what to tell you though.

Go see as many specialists as your insurance allows. Get in to your doctors and don't fear that they won't like you. That's just part of the anxiety. Let go of that for awhile so you can try to get to the root of things. If you have to take some extra anxiety meds to get you through, do it.

We all care about you a lot, Mike. Do take good care of you.

Hugs,

Kitty aka LKitty

12

I think I will write everything down and either give the doctor it or work it up into something I can express verbally... writing has often helped me in the past so I hope it will continue to do so xx

13

I think I will try the writing it down thing, even if just to prompt me to say what I want to. I have really good doctors here and I do not know why I am so scared of telling them everything, only that my confidence with things like that is really low.

Mike xx

14

I think a good doctor is definitely the key to things. I have several doctors here who seem really good. There is one at the practice I am not as struck on but he is next to never there so I am not worried about him. I just feel like it is a waste of resources treating me when there are other people with life threatening problems who need help.

xx

15

Hey there,

yes my normal doctor referred me to them. I had my psychologist phone them today and we managed to get an appointment for me... 21st October. I am lucky that in the UK we do not need insurance as we have state healthcare and everything is paid for out of National Insurance contributions (for people on a low income this is $6 or so a week. For people on benefits/welfare this is nothing and for higher earners it can be up to 10% of their salary.

I think anxiety is playing a large part in things at the moment... I am working my way through that with the psychologist I am seeing and feel a little better about things already xx

16

I wish they could figure out fibro lol... would make things a lot easier. I would have the cortical steroid injections in the joints like my knees where I know there underlying issues such as arthritis but do not know how much it would help with the nerve pain which seems to be the one that bugs me the most xx

17

Not me with the pain pump... they wanted me to try a rotating schedule of medication but we have not yet got that far... still trialling a cream for them which is meant to act like a heat pad... it is good but I got in a bath with it on and spent two hours feeling like a house fire survivor having my back rubbed with aftersun and then water etc... it was a horrid night and has put me off the cream.

I finally got an appointment today. My psychologist phoned for me... 21st October :D

18

Mile I hate that you had a bad time with the cream. Hopefully they can straighten out your meds soon.

19

Hi Mike,

I'm really sorry that fibro's doing you like this. I have a hunch - is it cooler and autumn-like where you are in Scotland? if so, the weather could be causing those awful clicks and pops. I got them too, in my knees last year, after my car accident, which I thought caused them, until i realized that I'd just returned from warm, sunny Florida back to cold and sunless Massachusetts. The change in my body was like night and day; I literally felt like I slammed into a brick wall. And the cracking and popping led to this hideous, searing, knife-like pain in the knees' fibro tenderpoint.

I saw a knee doctor who gave me cortisone shots in each knee. They really helped! He said it was osteo-arthritis, which I think is true; the osteo was causing the pain and the fibro was amplifying it. And so I'm wondering if yours could also be due to osteo in your hip and if cortisone would help or not. Oh, and my knee-caps were worn down and sliding around. I'm wondering if you're also having some sliding around/dislocation in your hipbone area? (I tried PT for mine but it made my knees much, much worse. I couldn't walk on them for quite awhile. So I'm not sure if PT would help you or not.)

Of course, al of that is suppositionand conjecture. What you need,Mike, is to go back to your doctor and let him/her how much pain you are in. There is no shame to it, Mike. I do it all of the time with my doctoro, and make up comic-strip-like scenarios in my head of how my doctor must think I'm the biggest nutjob/hypochondriac in Massachusetts, but I still go to see her whenever I have a change in my pain level or if something is up! Your doctors sound like they're pretty understanding people, too. You really probably do need to get more x-rays done to make sure that nothing has changed in your joints/back. And go and see your rheumy! And what about a specialist for your back pain and the hip pain?

And what is WITH your pain management clinic??? Are they the only ones to offer this service in your area? If not, I'd suggest trying a different pain management clinic. But you know, mine drops the ball A LOT when it comes to scheduling appointments and procedures too. Seems like these places may not pay staff well, perhaps, so have less competent staff there? I'm not sure what the problem is but you do need to get someone helping you with pain management ASAP, as it is unfair for you to have to live with that kind of pain level. Maybe you need new meds or your current ones need adjusting. (I almost wrote "tweaking" but that reminds me of "twerking," which reminds me of Miley Cyrus, which is just a big "NO!")

Please let us know that you will take proper care of yourself and call your doctors. Imagine yourself as your own pet. My goodness would you let your own dog suffer like this? Wouldn't you bring your beautiful lab to the vet? YES. So treat yourself as well as you treat your pet. Heck, pretend you are your own pet, if that makes it any easier for you. You can be a feisty Scottish terrier.

And yes, I do want to take part in the exchange stuff. But I'm willing to wait until you're better before getting set up with it, if need be.

20

Hey there,

I have succomed to pressure and visited the doctor today. I had things I wanted to talk with him about but he had my blood tests back and that kind of blew things out of my mind. They think I have either diabetes or glucose intolerance. I have to have more tests on October 2nd I think. The pain clinic have made me an appointment as well so things are moving slowly.

I think the weather does make a difference to me as well... it is nasty and although the pain is not worse per se on a certain day the flare ups throughout that day are much more intense when the weather is bad... I think from a rheumatological point of view I need to have some tests done to see what is going on. I will speak about this when I am next back at the doctor.

On the plus side my psychologist has given me a three month break from appointments to see if I can use the techniques she has taught me to make a difference. I can however call for an appointment at any time in those three months if I find I am struggling.

Mike xx