Absolutely furious!

[diamond]

What do you take now Misschloe? Sounds like you have a great pain specialist.

Vegan i get pain in my neck throat glands ears and face so really no where is off bounds. However if you are concerned maybe you should see your doctor to make sure its nothing else if this symptom is new to you and persists.

 

[Misschloe]

Hi vegan finally got back to you , I have been on all the meds your on , if they are working for you that's great, but when you think they are not go straight to your gp , as with all meds our body gets use to them, so now and again we need to try something new, it may be in time you go full circle and come back to these meds I've done this over the years, I have tried all the usual meds for fibro, talking to the neuro, she suggested I tried a different med used for epilepsy, so now I take topiramate , fluoxetine,tramadol,paracetamol, my pain specialist also put me on nepropam but they stopped making it so just doubled fluoxetine, my gp reckons tramadol work more effect when taken with paracetamol, but talk to your gp before you do anything medication wise, as for your throat glands, yes it's part of fibro, I'm off to ent tomorrow throat causing me alsorts problems. You will learn to manage your fibro in your way, but it takes a long time, it like learning new skills again, but for lots of different things not just one thing. Good luck

 

[Cat_Lady]

Hi all,
I have just come back from the rheumatologist. My doctor referred me to one so he could diagnose me with fibromyalgia. My doctor thinks I have it. I have every single symptom apart from IBS. I was only in the room with him for 7 mins. I wrote all my symptoms down but he didn't really read them. He made me lay on the bed and told me to lift my knees up. Then he twisted my ankles around a bit. I asked him if he was going to do the tender point test and he was adamant that that is what he'd just done! Well I know it damn well isn't! I told him it felt like thistles were being dragged across my muscles and he said that was my brain releasing pain chemicals. When I asked him why my brain was doing that he just said "If I knew that we could cure everyone" Then he told me to go to the pain clinic and ushered me out of the room So that's that then...........I have to keep taking tramadol and gabapentin and amitriptyline and never know why I need them?
I'm in the UK and this is all free on the NHS. I wonder if it's worth paying to go private? I was so hoping for a diagnosis today. He could see from what my doctor had sent him that my blood tests are normal and my xrays and MRI are normal. I thought he would read my list of symptoms and do the tender point test and agree that it was fibromyalgia. When I press the tenderpoint myself they are sooooooo painful.
Anyway I cried all the way home because I hate feeling like I am insane.
Any advice from anyone?
C X

I can relate! I too am absolutely frustrated. I just got back from seeing a rheumatologist. He's the second rheumatologist I've seen since last summer. His website actually states that he treats patients with fibromyalgia. So his PA asked me a few questions, looked at the notes from the three other doctor's I've already seen (including the blood tests that showed nothing at all), and just dismissed me by saying that it's in my head, and that he can't give me a diagnosis. I told him I KNOW I have fibromyalgia - I've been researching all of the causes and symptoms for over 1/2 a year now. He asks me, "how do you know you have it?"???? Hello....I just told him. I have almost EVERY symptom of this disease/illness. I need HELP, not someone telling me that I don't have it, or don't know what I'm talking about. I guess I should be glad that he referred me to the fibromyalgia treatment center at the local university (I won't name names. Grrrr...hopefully, THEY will give me a diagnosis). They told me that his office treats people with fibromyalgia....they just don't diagnosis it. What???? Does that make any sense at all? I don't like being lied to.

I just want to know what I'm dealing with, and to be taken seriously. I've read other people's posts saying that they too are having a hard time just getting a diagnosis. I'm sorry, I just had to vent. But I'm glad I'm not alone in feeling so frustrated - and angry. Good luck to you in getting a diagnosis as well. This is so frustrating. : (

 

[Misschloe]

Hi cat lady your not alone lots of people with fibro take years to finally be diagnosed, it's very frustrating there are no blood test that I am aware of to diagnose fibro, here in the uk they diagnose on your symptoms and your pressure points, and how long the symptoms have been ongoing, try and be calm, as stress just increases your pain, it's a long process as they are believers and none believers , have you talked to a gp, tell them how you feel, I say I've had fibro 12yrs but only been diagnosed about approx 6 bit years, and that's only because I got a new gp, who had a patient previous with fibro, so could relate to my symptoms . There will be someone out there with answers for you, just keep asking the questions. Hopefully you will get your diagnoses as soon as possible so you can get the treatment you need. Take care

 

[vegan]

Thankyou for all the replies I really doubt I will get a diagnosis. That's just how it is. I know what u mean about the pain meds not working over time. The tramadol is the only thing taking the edge off a little. I was awake in the night last night with my collar bones killing me. It felt like I'd been stabbed and it was sending evil pains thru my neck and arm. They felt like they were being stung by bees. It's still doing it now and I've had 5 tramadol today. My gp wants to send me to the pain clinic. Have any of you had good experiences with that? Do they really help to ease the pain? What can they do? x

 

[Misschloe]

Hi vegan I've attended the pain clinic they offer quiet a wide range of pain relief, they have nurses who see patients daily with chronic pain, they are very helpful and are willing to help you get as much pain relief as possible. They offer acupuncture, hydrotherapy, tens machines, they can refer you to different services for different problems your having, diet, feet, legs , back, the list is endless, they also are working for the pain specialist who can advise on the best medication he thinks will suite you, this means he will contact your dr look to what is best is for you as he as a wider knowledge of available meds for chronic pain because this is his field, I had one to one psychotherapy I was secptical at first but did benefit from this, then went on to group therapy, it's run by a psychotherapist you cover everything from daily routine pacing which with fibro is very important, sleep hygiene this helped me as I suffer terrible with insomnia, relaxation, you learn about small things you thought would not affect you,physio attend help with gentle excerxises, with what best if you need any walking aids , they are different walking sticks for things depends on hand balance etc , also at our group the pain specialist attende so got chance to ask questions , and get answers without been rushed a more personal approach things explained in more detail , any questions about meds , side effects, any you want to ask , this is all done through the pain clinic. If you have got the time give it a go some things work some don't, but you got nothing to loose but time , and may gain a lot or even a little can go a long way with fibro. Take care

 

[vegan]

Thanku misschloe,
Yeah I think i'll probably end up giving the pain clinic a whirl. I was just a little sceptical after my last farce of an apt with the rheumatologist. I just couldn't cope with being treated like that again I hate hospitals and doctors etc at the best of times. I am the last person u would find at these places but alas the fibro symptoms got the better of me and I had to go. That's why I hate being accused of hypochondria when I am the absolute opposite of one. I know the NHS is under huge strain but a little compassion wouldn't hurt. If they really can't even be civil they should choose another profession!!! Hope u're having an ok day xxx

 

[Eyesup]

Agh, here in the US I couldn't find a doctor to help me anywhere, my gp was a joke, I didn't even know what FM was and was pointing to the tender points crying, he just shrugged. Got NO meds just sat in pain. My ENT referred me to a reumotolgist (my gp rolled his eyes) because I could barely swallow. Reumotolgist diagnost me within minutes. Still nothing for pain. My son has our memory foam mattress (was the guest room) and when I get so bad I can't stand it I run him off so I can get some sleep. I know you want a diagnosis, but take it from someone who couldn't get even meds, if I had to choose between a diagnosis and no relief or medication without a diagnosis I would take the meds. I've learned to take even the smallest thing as gient gifts. It's not fair. Nothing about fibromyalgia is fair. I don't know if I will ever accept that it will probably always be an uphill battle. But we are strong!

 

[Misschloe]

I would try vegan apart from my gp this is we're anything positive came from, if you want to try anything that you think that will help you, just tell them when you go to the clinic, they will discuss your pain what you've tried, but don't feel every ones like the idiot of a reumy you seen they are not, explain to them your pain , and how anxious you are because of your last experience, but my pain nurses were great take care.

 

[vegan]

Sorry to hear that eyesup Why wont they help you with medication? Is it stricter in America for pain killers? I've been lucky in that respect thank god! I just don't know how u can cope without any? I ccouldn't function at all without them. U need to insist!!! Why do the doctors want you to be left in so much pain? x

 

[Cat_Lady]

Have you tried any topical creams/ointments for the pain? I'm a big fan of "emu oil". Aspercreme works great too, but emu oil is better. You can get them at Walgreen's.

 

[PhillyFibro]

Hello all ... especially "Willow"! Next year is #30 for me with fibro ... took seven years of hell before diagnosis from a 'rheumy'. each of you is going thru what all of us do, so don't think IT'S YOU !! Just take a look at how many people are replying here ... we are not alone! The incredibly hard part is having family and friends doubt you ... or mock you ... or just disappear. The Forum cannot help with that ... but, there are many of us here who've learned it's a continuous struggle, one we MUST fight every day! Year by year by year i've learned this: getting outta bed in the (late) morning is a kind of victory. Getting to the bathroom on time, another Do not join others by being hard on you ... do what you can, when you can. It you're not happy with your doc/s, change them. We need help, not insults or dirty looks ... so be good to you and keep coming back here: we are the ones who know your struggle is real. Thumb your nose at the others !!!

 

[terbaer]

Amen PhillyFibro! Well put!