just been diagnosed unsure if doctor is right

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just been diagnosed unsure if doctor is right

Postby mandyc » Sun Aug 13, 2017 12:36 pm

I went to the doctor about a year ago because of a frozen shoulder (took about 2 years to resolve itself) and he suggested I had fibromyalgia and gave me amitryptaline. I didn't take it because I thought my frozen shoulder could be caused by anything and as it cleared up by itself I didn't give the amitryptaline a go. I had been suspecting however that I had fibromyalgia and that I had it for some years. I was on Venlafazine (for OCD) for a couple of years and stopped taking it after I got a frozen shoulder. I was only sleeping for 2 hours and then waking up and then sleeping for another 2 hours but I could never get a full nights sleep which I blamed on the venlafaxine and as I didn't feel that it was helping with the ocd I stopped it. Very nasty withdrawal and it didn't help with the sleep problem. I had numerous aches and pains which I blamed on the ocd as my ocd was very bad and meant I carried overly heavy loads of shopping which hurt my knees and my arms and at one point I was sleeping on an exercise mat on the floor because I didn't feel I was clean enough to get into bed. Having spent 3 years sleeping in this situation I expected to have all the pain I was getting. But the pain hasn't gone away despite the fact that I'm now over alot of my ocd, mainly because of the pain and tiredness I'm experiencing and the inability to think through the cleaning rituals I would normally carry out without a second thought. I don't carry heavy shopping back anymore and i'm sleeping on a comfortable bed and have been for 3 years but I'm in more pain than ever.

I've always been sensitive to smells and loud noises to the point where I know it's not a normal response. It's the pain though, the non stop constant feeling like someone is stabbing me in the lower hip that is really getting me down. Recently though the pain has been travelling. I can be sitting still watching tv and the pain will just suddenly come on in my right shoulder (as if someone is stabbing me and it becomes so stiff) then about 20 minutes later that pain just magically disappears but then I'll get excruciating pain in my calf muscle, then that disappears and the pain is back in my hip where it resides most of the time. So I''m due to see a rheumatologist in a few months. I have self diagnosed myself with fibromyalgia but I'm secretly hoping it's just maybe some thyroid problem because I am desparate not to accept that the rest of my life will be spent in non stop continuous agonising pain. I have muscle tremors in my left thigh for which I'm taking 2mg diazepam every second night as I find this relaxes my muscles so that I can get some sleep but I still don't feel refreshed when I wake up and I'm still waking up alot throughout the night. I was in so much pain the other night that I took my partner's tramadol (he was prescribed it two years ago after an operation but he didn't use it) and found that it helped with the pain alot although it kept me up all night. I have tried the amitryptaline but have found it doesn't help at all.

Just wondering if everyone goes through this state of denial when they get diagnosed. I've been reading so much information online about other things that it could be that I'm overwhelmed now. The weirdest thing that I get is every now and again I get this what I can only describe as a wave coming over me from head to toe where I instantly have no pain and all my muscles relax. This only lasts for a couple of hours but it is amazing when it happens but it just confuses me more as to what is wrong with me. I also feel better if I move about because sometimes it just seems like my body is seizing up on me. Sitting down makes it worse and lying down is the only thing that really helps. Everyone seems to be on lots of drugs and I don't know what to ask my doctor for first.
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Re: just been diagnosed unsure if doctor is right

Postby SchroedingersCat » Wed Aug 16, 2017 3:36 pm

No, I've never gone through denial. I suspected for a while before diagnosis that it was FM, and was not surprised when the GP, Physio, Neurologist and Rheumatologist all said it was Fibromyalgia. I just accepted it, as the alternative - MS - was a lot less pleasant. All things considered, I'm actually damn fit and healthy for my age, it's just that every step I take is painful.
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Re: just been diagnosed unsure if doctor is right

Postby LindyM66 » Fri Aug 18, 2017 10:10 am

Hi Mandy

I experienced symptoms for many years, prior to receiving a diagnosis.
I have widespread pain and there are times when I feel I'm hanging together " like a pound of mince"!
You mentioned about the waves which feel as if they're going through your body - yes, I can relate to this feeling. I also get, what I refer to as "zaps". It's like an electrical buzz type feeling - I can't describe it any other way.
My body did seize up, and I was in excrutiating pain. Many visits to GP, A & E, and I was eventually referred to Rheumatolgy, where I was given a diagnosis of FM.
What I will say, is, do not be fobbed off! I felt as if I was going round in circles, and no one was doing anything to help me.
Be ascertive!
I am currently taking 600mgs of gabapentin 3 times a day, along with a 100mgs of tramadol, which I take 4 times a day. Gabapentin has only been increased for the last month or so ago. I have good(ish) days, and not so good. I've been off work for about 12 weeks now. Aiming to return at the start of Sept. I have an apt to see Occ Health doctor on Monday, so we'll see what transpires. It will be a phased return and there will have to be changes to what I did before. Hey ho-we'll see what gives.
Regards denial, I think I was more angry, than in denial. Angry at FM for stuffing up my life. That's what it felt like. I allowed myself to be angry, then decided that there were things that I could still enjoy/accomplish, things I had to do differenrly, bit of course, there were also things that were, and are, a non-starter.
We have to come to a place of acceptance. Not in a " throwing in the towel way", but more in a way of understanding how FM affects us, and how we can " jiggery pokery" our lifes round about it.
What has hurt me more than anything, is that I have become invisible to many whom I considered were my friends. BUT, again, I have to bash forwards with that one.
Keep pushing forwards Mandy.

Much Love
Lindy x
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