I've had my symptoms for a long time now, but haven't really reached any kind of diagnosis. Recently a few friends and family members have suggested that it could be Fibromyalgia, and I was wondering if those already diagnosed with this could say if it they think it's what I have?
I have constant pain in my arms, back, neck, legs and hips. Sometimes this pain is very bad, and other times it's manageable and can sort of be ignored. I have IBS and very rarely have what you would call 'normal' digestion, I also suffer from very bad periods and have been diagnosed with Endometriosis in the past. I am always tired, frequently have headaches and seem to live my life in a constant bubble of pain and discomfort.
Can anyone advise me?
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Ali_in_Somerset
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Thanks, I have an appointment with my GP this afternoon, so I'm hoping to get him to talk to me properly about it rather than dismissing it out of hand. It seems that getting a diagnosis can be very hard.
Hello, well I have to go for blood tests on Friday to rule out renal, liver and joint problems, then after we get those results I have to go back and see where to go from there. He admitted that it could well be Fibro, but that we have to eliminate a lot of other things first. I'd just like to find some sort of answer, no matter what it is!
HiAli It took me a long time to get diagnosed people I new. had said about being fibro but I had not heard about it before doctors said it was a virus again and again then I read a article in Yours magazine it was as if I had wroth it took it to doctors and said that is me He then sent me to see a rheumatologist She gave me a injection and new meds done more blood tests that was novenber 12 went back lto see her 6 months later took with me a arthritis booklet I picked up at a pysio department on fibromyalgia I filled in the tender point figure wroth a weeks diary at the back and took it with me and said this is me. in october13 she took the book went off with rheumatolage nurse to read came in and said at your 1st appointment we thought it was fibro but had to rule other things out it was such a relive was diagnosed with ostio arthritis and fibromyalgia but buy then had lost the job I loved so don't give up get all the info you can on it and highlight part that is like you
Thank you, it does seem to be a case of let's eliminate a bunch of other things before we can say for certain it's Fibro. I've been struggling with all these symptoms for so long now that I just want an answer one way or another, no matter what it is!
I genuinely hope that you appointment went really well for you? What you have described could be Fibro but it could also be something else? As I am not a doctor I cannot actually say.
I have pasted you a link below to the FibroAction mother site, so I really hope that you find this useful:
Thank you very much Ken. I've been back and forth to the doctors so often now that I'm beginning to think I should send out Change of Address cards! I have to go for blood tests, then a consultation after to see if they can eliminate other possibilities before they'll even consider Fibro, so fingers crossed I suppose until I can get some answers x
Ali, don't be discouraged. It is good that they are doing tests to eliminate other things. I was dismissed at first by a few drs who suggested it was in my mind or they just couldn't be bothered to find out what it was. It was only a locum GP in the end who was determined to find out what was wrong with me. I had x-rays, brain scans, blood tests galore, before they said it was fibro. It was a relief to have diagnosis in the end, as you can then treat the symptoms as best you can and you don't feel like a hypochondriac any more with constantly changing symptoms. I hope they diagnose you quickly and you can get some relief from your symptoms. xx
Thank you : ) It's been such a long road so far, it took years to get diagnosed with Endometriosis, and even when I was, I was still pretty much left to just get on with it. Ah, sometimes it feels like the worst part is fighting with the doctors to get them to listen to you. I have a great respect for doctors, but I think they have unbelievable arrogance sometimes and really do refuse to listen. It's hard, but I think we need to stick by our guns xx
Hello Ali, the list of your symptoms you have described above could have been written by me! The only additions for me would be continual pain in my wrists, feet & knees, also inflammation around the knees, depression & anxiety (which i think is mainly due to my limitations & continual frustration, which i find quite difficult to deal with) also very poor memory/concentration.
Years ago i was diagnosed with Cervical Spondylosis, which can cause quite a few of the pain symptoms that i have, but they are not all usually synonomous with CS. Yet i have still been pushed from pillar to post, had many blood tests, even been up to Kings College Hosp, but still nobody will give me a definate diagnosis & the last rheumatologist i saw last year gave me numerous blood tests, an x-ray & then just sent me a 1 line letter in the post telling me that all my blood tests were fine & said "i've included a leaflet on Fibromyalgia for you to read"! Nothing about a diagnosis & no offer of any further assistance. I'm afraid i'm not tough enough with these docs/specialists, as i always tend to clam up in the appointments & find it very difficult to talk to them. You should definately be firm with your GP, Rheumatologist & don't let them fob you off & if you are worried that you don't feel strong enough to be firm with them, then take somebody with you who will help you fight your corner.
I also totally understand how debilitating it is to suffer with heavy & painful periods, i have suffered with them since i first started at 10yrs & they just progressively got worse, regularly making me housebound. Over the years I have had many different pills, injections, investigations, etc... & recently had an op to remove 2 lge fibroids which they finally found & have also had the Mirena coil fitted, so far the heaviness is greatly improved & the pain has reduced a fair bit, although with the Mirena as you may probably know, it can take up to 6mths for everything to settle down & become more regulated. What investigations/treatments have you received or been offered for your period problems? Also if you don't mind me asking roughly what age are you? I have a 5yr old boy & am 39yrs of age & just about to reach being fabulous at 40!
Oh gosh, you poor thing! It sounds like you've been pushed from pillar to post with regards to doctors. I've been there myself to some extent, going back and forth since I was about 13 and not really getting very far. I've had a couple of laparoscopies and laser treatment for my endometriosis. Now I take the pill for 3 months non-stop with only a week's break to ward off my periods, but the pain is still there, which is a worry. Can I ask you for a bit more information on this Cervical Spondylosis?
I'm only 25 and haven't had any children, nor do I have any plans to, despite one gynaecologist telling me it would 'sort me out'! Unbelievable really, that that's the only advice they've ever bothered to give me! Ah, I think all of us who suffer these continual problems end up feeling quite low from time to time don't we? It can be very hard to never feel 'normal'. xx
Hello again Ali, sorry it's taken me so long to reply!
Have the gynaecologists or GP's ever mentioned the Mirena coil to you before & whether they think that it might help you? As for your back, neck, leg, arm & hip pain, have they ever given you any x-rays or scans on your neck/back or has your GP ever referred you to a rheumatologist?
Yes i know it's ridiculous isn't it, i also had 3 medical professionals tell me "have a baby, that should help to sort you out"!!!! Well it didn't, lol! So it shows just how much they know! No i quite agree it is hard when you don't feel 'normal', but thank goodness for groups like this where we can feel comfortable talking to other people with very similar problems & feel as if we are the 'normal' ones for a change!! xxx
Sweetheart, sounds exactly like me. I also had endometriosis and had to have a total hysterectomy at 30 years of age. Go to your doctor to get tested. If they don't or can't give you pain killers go to a pain clinic. I did and now at least my life is bearable. Hope you find some relief soon!!! xxx Mizti
Hello Mitzi, it's pants isn't it???? So sorry to hear you had to have a hysterectomy, and so young as well. I'm 25 myself and thinking that this might be a possibility for myself at some point, although luckily for me, I don't actually want children, and I'm so sorry if you've been denied that.
I have heard that acupuncture can be helpful with the pain management, is that something you've ever tried? xx
I would but there isn't anyone in my area who does it. I take Opana ER and it helps a lot. I did have one daughter, after that I found out I was pregnant again when I went to the ER because of a kidney stone. Passed the stone but lost the baby and afterwards no D&C and things got terrible for me. I'm so sorry you have it and possibly fibromyalgia as well. It's a mean disease. Go get tested honey and if you have anymore questions I'm here for you!!! xxx Mitzi
Oh how sad, and such bad aftercare! It's lovely that you have the blessing of your daughter though.
I have blood tests on Friday, then get the results on Wednesday, then more of the same until a diagnosis can be reached I think. Thank you for your support, let me know if I can be of any help as well xx
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