Fibromyalgia getting worse - At my lowest..

Bones, joints and muscles
1

Hello,

I hope there are someone out there that can help me, I am at my lowest. - So depressed, in pain 24/7. Constant leg pain, back pain, numbness and ache. Fatigued - not getting a full nights sleep, neck ache etc etc etc.. In all honesty I could go on all day about my problems. And the best bit about it - I am 21 years old, had this for almost 4 years and just want it to end, and I know that if it keeps up like this for ever then I want my life to end also.

I am tired of making constant calls to the doctor, I have a list of symptoms that seems never ending, and none of which ever improve. I have forgotten what it feels like to be 'comfortable'. And I am almost at the point where there is no more medication that can be given.

I currently take: Tramadol 50mg 2 every 4 hours. Naproxen 500mg 1 twice a day for hormone imbalance, Lyrica 100mg 1 4 times a day, Duloxetine 60mg, Zomorph 1 twice a day. Loratadine for hayfever and Buscopan.

I have been through various meds, I have try Hydrotherapy, Acupuncture, Physiotherapy, Rheumatologists and referred to the pain clinic. I saw a consultant who told me again that 'there aren't many options left' and that I will need to wean of Lyrica and then up my Duloxetine, and if that doesn't work then come of duloxetine and go onto topirimate. 

I am also awaiting an MRI scan as my 'down below' is so painful, and it hurts during sex. I am urinating so frequently and always constipated. I also have gall stones but that isn't causing the pain in my pelvis area.

I had an MRI scan a couple of years ago and it shows my left disk is inflamed and compressed against a nerve. The rheumatologist has said that this isn't what is causing the pain - and I think it is, and it has definately worsened. I have seen physio and they feel this is causing extreme pain.

I am so tired, and so fed up, I can't imagine living my life with this pain. I feel like pouring my pot of Tramadol down my throat in attempt to make the pain go away. 

I feel like I am kidding myself, hoping that oneday a breakthrough cure will appear, and I feel like all health professionals are concentrating on is trying to help us 'live' with the pain rather than worrying about curing it. Clearly they are scared of what they don't understand. I have worked in the NHS for 5 years and all the doctors I've worked at say similar things when I ask them about Fibromyalgia. There is no cure - And it is a matter of trial and error on what works for you.

Am I missing something? Or is there something your doing that works? Is there something else I can try? Do I have any hope?

Any help would be much appreciated

Thanks x

2

Hi Holly, I felt compelled to respond to your post to at least plead with you not to give up! It sounds like the level of pain you're experiencing is intolerable & no-one should be expecting you to just put up with it!  I feel you ought to show your post to your GP - they need to understand how desperate you are (if he/she is not very supportive or clued up on fibro then, is there another GP at the practice, or it may be worth changing GP even though it may feel like a hassle).

I don't have any medical knowledge but, going purely off personal experience, I wonder whether some of the meds you're on are actually worsening your situation?  I certainly can't tolerate tramadol (gives me horrendous headaches & turns me into a zombie).  I understand zomorph is related to morphine - morphine related drugs, although they have helped me with pain, also give me awful headaches, pressure around my eyes, exacerbate depression & knock me out.  I was prescribed Lyrica when I had trigeminal neuralgia but they had a similar effect to the previous two, & I'm not sure they were all that effective for the pain.  I believe duloxetine is an anti-depressant though it sounds like it isn't doing much for you at all - have you tried any other anti-depressants?  If not then it's certainly worth talking to your doctor about others, as they seem to vary greatly in effectiveness for different individuals.  Obviously they don't work instantly & you should never stop them without weaning yourself off them under a doctor's advice, but I think some can be changed to another without any ill effects. Personally sertraline works quite well for me. Also, I take my sertraline after breakfast - if I take it at night it makes it even more difficult to get off to sleep - this may be the case with others such as yours?  Naproxen can certainly cause constipation (as with many painkillers - quite possibly the zomorph & tramadol may be making this worse too?).  I am on gabapentin as a fibro treatment - initially prescribed 3 x 300mg 3 times daily (was unable to work then, or do anything really, but it helped with pain & sleep).  Gradually reduced dose over several months & got it down to 1 x 300mg each evening, with 1 x 100mg during day when needed.  This is a very low dose but I can't wake up/drive/go to work if I take more!  I do find the gabapentin eases the pain though, as well as helping me to relax enough to get some proper sleep - I'm sure it would be even more helpful if I still took a higher dose.  If you haven't tried gabapentin please explore that - I have heard that lyrica doesn't work for some people/as gabapentin doesn't work for others.

You must insist on getting an up to date scan if the last one was a few years ago - things may well have worsened a lot since then, & it's easy to dismiss every pain as "fibro related" & then, as you know, some docs may say there's nothing they can do when, in fact, it may be a treatable condition.  No wonder you feel so awful when you're in so much pain - it's a vicious circle: pain-depression-fibro-pain & so on.....if you could get more effective treatment for at least one aspect then, hopefully, it would have some long-term benefit for your other symptoms.

You haven't mentioned whether you attend a local fibromyalgia support group but, if not, it may well be worth looking for one.  I know it won't resolve your problems but at least you'd have regular contact with others who understand, as well as being able to compare notes about treatments etc.  The Fibromyalgia Association UK has a good website, there's also one called Healthiculture (which is American but has some useful articles).

I'm sorry this isn't more helpful but I do hope you can take something from it. There are new medicines being developed all the time so hopefully they will come up with something for all of us!

Look after yourself!

xx

 

3

Hi Holly,

There is always hope. I have been living with this for about 27 years now. I have to really "soldier" through some days. I made my self sicker for a very long time by not taking care of myself when my body told me I needed rest. 

Lyrica did not work for me at all. Made me very tired and very crabby and depressed. Also, for me, Tramadol was worthless. I did better taking Motrin than Tramadol.  

It takes a while to get the right meds for your pain. Don't give up. I know how you feel, but things will get better. Physio didn't always work for me either. It is a matter of trial and error as you say. 

Get some folks around you who understand and will support you, even if it's just people on this board.  You need to talk to someone, especially when doctors don't seem to be hearing or helping. 

As for the constipation, I took so many things that were supposed to help, but then found one probiotic that works wonders for me. The probiotic I take has over 14 billion "good bacteria" as it states on the bottle. Brand names are very expensive, but if you search you can find a good one for less money.

Since this problem has been cured for me I feel 100x better. 

Please let us know how you're doing.

Cheryl

4

Hello both of you,

Firstly I would like to thank you so much for your replies. I am really stuggling, I feel asthough I have no one to talk to about this, and no one I can moan and get it out of my system. Of course I do have family and my partner but it's not the same as talking to people who are going through the same as you are.

The thing is, my experiences with GP's aren't great, they often seem unsure about Fibro, and in a rush for me to leave the room so they can get on with the next patient.

I have been on Gabapentin before, (300mg three times a day, however I gained a lot of weight whilst I was taking it. Which is why I stopped taking it. I saw the doctor today, not that he offered me much help. It was to discuss my depression and suicidal thoughts/feelings. He actually asked me if I was taking anti depressants - he should already know this and has my record on file/pc.

I told him that I am on Duloxetin 60mg, and said that I am clinically depressed, so he decided to leave it as it is - and gave me the number for insight to speak to a councillor. I also had an appointment to have an ultrasound at my GP surgery, and the imaging person wanted to do an internal/camera internally and found a small cyst on my left womb. (A couple of months ago my mum was found to have the same thing and then was found to have cancer.) They have got rid of it as far as I know. 

Do you think I should be concerned that I may have or get the same thing?

I am so tired - all of the time, and I could go to sleep at any time. I never manage to have a full nights sleep, I wake up constantly, my legs ache all the time, and are so numb. I feel they may as well be detached from my body as they are little use to me.

I don't know, I just feel like I can wait another 10 + years going through this pain whilst I wait of a miriacle cure of Fibro to come along. I see no light at the end of the tunnel. What also gets to me is the fact that I am currently taking Zomorph and it isn't affecting me at all. And if like the doctor says - I have little options left then I have no hope.

Amanda - I have previously tried Citalopram & I have also tried Amitriptyline, but they done nothing for me.

I also suffer migraines and I have to take sumatriptyline when they occur - fortunately they help quite quickly. The doctor has changed my Naproxen to meloxicam and it no longer helps with the extreme breast/nipple pain I get due to my hormone imbalance. I also take mefenamic acid for the pain I get down below that I mentioned previously.

I just wish people took me seriously, I know my body better than anybody. I knew there was something wrong with my nerves before I had the MRI years back, and I guessed I had a ovarian cyst before the ultrasound. But the doctor is too busy trying to save money rather than spend it on giving me a better quality of life.

I think I will try to go to a Fibromyalgia support group in the hope that somebody out there can help me. I have to say speaking to you and others does make me feel slightly better in a way.

I currently take a probiotic yoghurt daily and I also have Fibogel daily to help with my constipation.

Thank you so much for your help. I know neither of you are clinical but you have been a fantastic help and it means a lot to me (:

xxx

5

Holly,

Please stay in touch. The wonderful people on this board have helped me through two very low periods and are wonderful support. 

Cheryl