hello i am new to this web site ,i ha... - Fibromyalgia Acti...

Fibromyalgia Action UK

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hello i am new to this web site ,i have fibromylagia and hip pain neck pain shoulder pain leg pain etc. anyone out there the same

18 Replies
18 Replies
Cookie72 profile image
Cookie72

Hi Chelsea , welcome to our caring sharing laughing fibro club, lol it's a great site to be on, we have a great bunch of fibro friends on here all willing to listen and share their pains and give good advice, all the pains you are suffering are symptoms of fibro, what medication has your GP prescribed for you ???, sending you gentle hug and again welcome look forward to reading your posts....Dee x

Fermerwill profile image
Fermerwill

Me too your not alone there is a good web forum fightback have a look. Me same illness as you on 36 tablets a day still in pain ahhh

Ginsing profile image
Ginsing

Hi there Chelsea as you will soon find out there are lots of us in the same position as yourself. I suffer from the pains you describe plus a few you havent. You have made a good move joining our site. It is full of lovely people all caring and sharing. We discuss medication and ways that we can help each other it is really brilliant an open loving we also play virtual games to enhance our

lives have some fun all are most welcome so if you see one starting do join us :) Looking forward to your posts xxgins

Pinz profile image
Pinz

Hi Chelsea and welcome most of us are in the same boat so feel free to chat xx

cowsrock profile image
cowsrock

I have all of them plus as Gins does, this site has helped me cope and it gives so much advise, welcome :)

Shazzzy profile image
Shazzzy

Yep

UnderAgain19 profile image
UnderAgain19

That sounds just like me, but they've told me I have mild osteoarthritis of the hips, worse in the left leg, which GP thinks may account for pain in hip, groin and my thigh, but some specialists don't think that there is enough damage to account for the amount of pain I experience. I'm finding it all very confusing.

lighterlife profile image
lighterlife in reply to UnderAgain19

Hi ya I having the same as you with the hips groin osteo with the same answer from my gp and mine worst on the left ,,At night its a night mare as laying on leftside is so painful xxxsoft hugs

UnderAgain19 profile image
UnderAgain19 in reply to lighterlife

Hi Lighter, do you take pain meds for this and if so do they help? I am on codeine phosphate and paracetamol, they do help a little.

fibro profile image
fibro in reply to UnderAgain19

When you say some specialists, have you been seen by different consultants, same hosp, different hosp? Have they done scans as well as X-rays??

I'm only saying this because i had one hip replaced 10 yrs ago and the other one is on the list to be done. Im just waiting on a date now. I was too young for the first hip, and still too young for the second, but just because a flat Xray may only show up as slight arthritis, doesn't necessary mean thats whats going on.

I have recently had a 4 inch needle stuck in my hip with steroid injection. They are aware that the pain relief from it wouldn't last, but they needed for how long and where. I wanted me to keep a pain diary to see whether or not the steroid and local anaesthetic made any difference as it would then determine whether another hip replacement on that side will help.

They know it wont help with the Fibromyalgia for one minute, so we both needed to be sure wether the pain in the hip is caused from arthritis or Fibro, or something else completely!

Depending on your age hospitals are very quick to dismiss the idea that its only a small amount of Arthritis, so couldn't possibly need a hip replacement. For some people having joint replacements can give them a new lease of life and give them their mobility back, but to do so there are so many risks involved and hurdles to jump across,

Each one of us is likely to treated different because if who we see.

I wouldn't call it lucky, but i was born with problems, so i would sat privileged to have been and still am treated by the best i could possibly be given. My consultant would happily put a total hip replacement in a child if it will give them a better quality of life. Sadly though, it doesn't matter how much pain i am in, his waiting list is huge, so i just have to wait my turn now. I know i wont be pain free as i know what pain is my hip and was is caused by other reasons, but by being made to wait, because of other health issues, i have the time to concentrate on losing weight. In some people weigh loss alone can play a huge part in relieving pain, but it just depends how advanced the degeneration of bone has got, but I do know by me losing weight will help other health issues. I thought it was going to be impossible but in approx 6-7 weeks i have lost overva stone. I can eat anything, but because my mobility is minimal, so must my diet be,

If my body isn't burning the fuel/ calories it therefore doesn't need many, so my diet has to be minimal too. Its slow but its working. It just takes shear determination, which sadly other conditions just aren't allowing me.

The hospital have by passed all the rules for waiting list times because they have seen me assessed me, pre admission assessed me, so now its like the hidden waiting list that no one gets to hear about. I have to wait my turn and it could be months before i am admitted!

At this moment in time, I'm really feeling low about it as i thought it would be done after xmas, it could be spring before I'm back there again, or longer!

Sorry to go on, but just wanted to say, i know how bad hip pain can be. I have had issues all my life, and many operations later. I think this is the longest I've had to wait! Xx

UnderAgain19 profile image
UnderAgain19 in reply to fibro

Thanks for that fibro, very interesting. I have had an x-ray of the hip and MRI scan of the back, but recently been referred to see a hip specialist to see if he/she can find out what's going on. I've seen a pain management specialist, and what I thought was a back specialist, but it turns out he's a physiotherapist that consults with patients. He's the one that has referred me to see a hip specialist. I've had Nerve and Muscle conduction study, and of course my GP. I am seeing a physio for shoulder impingement, but that's it so far (I think).

I'm in my 50s now, so probably getting to that age where things are starting to go wrong. I've always been active, running, walking, gardening etc, but had a number of health problems accumulating over the last several years. I've had Hashimoto's since I was very young, picked up Asthma when I was 42, and then the ME symptoms started around then, the fibro symptoms came a little later and now osteoarthritis.

I'm told that they may give me a steroid injection to see if it works or not, so other than that, nothing major. Codeine and Paracetamol gives some relief, but other than that, waiting to hear from the hospital.

Sounds like you've been through it Fibro, I hope things improve for you, not sure mine is bad enough yet for a hip replacement, but I am looking forward to the steroid injections.

fibro profile image
fibro in reply to UnderAgain19

I wish you luck. Im sure you are going in the right direction, being referred to the right consultant.

I have to admit that the thought of the injection sounded awal, esp when my consultant said he knows the relief wont be for long. May be he only told them to do a small amount, but im thinking that if they had put in more maybe it woukd last longer. Mine was just done in the Xray dept rather than theatre to save time, i even asked for a hand to hold, but tge consultant radiographer who did ut made sure there was loads of local anaesthetic and it was fine, i watch it in a screen too. Had i known i was going to have to wait longer ibthink i woukd have asked if they could even do it again, but for me it was just for investigation purposes.

Sounds to me that they are doing the right thing for you.

I too had my back MRI'd its just a matter of ruling out things.

As far as hips go i knew as a child this is what life would be like, but if they knew then as much as they do now, i too most prob would have had a total hip replacement much earlier. But we cant change the past. We sound similar age, and from what you say, in relation to your hip pain, although it feels like a bigger pain just waiting and being shoved around, it sounds like they are doing the right things for you..

I have to travel 125 miles each way to the hosp but wont go anywhere else. I have been going there 34 yrs this december. Its like a second home. But sadly due tobthe way the NHS now work that hospital lost its right to manage the hosp itself. Its always been part of the NHS, but independent, they even had their own farm in the grounds at once time! Sadly no longer.... Most probably the food would be classed as unclean!! Lol

I too take dihydrocodiene, which i think is the same as you are taking along with separate paracetamol, so i can regulate my own dose, same with all the others i take. I used to take Tramadol but it wasn't helping at all. I also supplement all i take with diazepam, as i cant go on to morphine based meds without being in high dependancy in hosp. I had a lovely long chat with an aneathatist on monday, its because of other health problems ideally they want to do the hip replacement with epidural. I might have to agree to it. Last one 10 yrs ago was more complicated due to fragments of mental work in the hip from prev ops, they did hat in two and half to three hours, they now reckon my consultant if its straightforward could do it in an hour!!!

All that side of it im ok with, like i say its my second home, its the waiting is going to do me in. Anxiety take over and makes pain worse, but as my consultant us a paediatric consultant i have to allow in my mind that his time should be with the little kiddies born with similar problems, to like i was. So thats helping to keep me focussed too.

I never think of it that oh i have been through it all.... Maybe to some i have...... But i just think, there are others who have been through a whole lot worse.

Im around if you want to PM me as i know whats not boring to one person because they are going through similar, could be to another.

I may not get on here every day, but i try to pop in occasionally.

I don't want to post details of hospitals etc or where i am, on here, it wouldn't be right. But i am a good listener :) esp when it comes to hips. I think i know more about hips than i do Fibro :)

You take care, and everyone else too..... Im just pleased to hear you are being sent in the right direction xxx (((( hugs ))))

UnderAgain19 profile image
UnderAgain19 in reply to fibro

hiFibro, let's hope so.:-)

Dihydrocodeine are stronger than codeine, I've had them once and they made me vomit, but I think I may have taken them without food, never again.....LOL

I hope you're feeling better soon

haribo36 profile image
haribo36

Hi Chelsea,welcome to this wonderful site :) people on here are so kind,caring and supportive :) you really are not alone there with those pains.What kind of treatment are you receiving?xx

Ardea profile image
Ardea

Hi Chelsea, yes just like you I have the same pains in the same places plus a few more in places you have not. I have rheumatoid, fibro and oesto - lucky me! But all the otherr replies are right. You all are so caring and understanding as you all have the same experiences but you take the time to care and share and not judge. A great site to welcome all new sufferers.

jillylin profile image
jillylin

Hi Chelsea,

sounds like all of us here. You have landed on a great site so grab a cup of tea or coffee, pull up a chair and make yourself at home.

Hugs

Jillyxx

Francesgoldwater profile image
Francesgoldwater

Yes but my biggest problem is my back. I also need new knees. I find big help from Gabapentin and Codeine it keeps me going, I hope you are helped on this site it is very caring and helpful. What are you taking for your pain?

Artmix profile image
Artmix

You are not alone. I also have pains in all those place and also my ribs. I have pulled muscles on my ribs and my heart muscle a lot. I take Gabapentin and Tramadol.

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