Newbie!! Needing some advice

Hi there I am new to this site or any forum for that matter.  I have come for some friendly advice as am at my wits end.  I am a married 36 year old mother of 2.  I was diagnosed with fibromyalgia around 4 years ago.  I am on no medication at all.  I am struggling with my symptoms and my doctors for any help.  I feel I am declining.  My joiny pain is out of control.  I am always in a horrendous level of pain to the point where I cry through it most days.  worst being in my thinghs feeling as though they are on fire.  This has now deepened and I am expereincing excrutiating pain in my knees and hips.  I am very stiff, very weak.  To the point where the mental exertion to put on foot in fron to the other or to keep a grip on something in my hand is exhausting.  I am like a zombie.  Permanently.  I don't sleep.  I am permanenetly thirsty.  Have the sensation of my wholebody needing to stretch and click although doing this bring no relief.  I have been back to docs to request a blood test which has brough back high levels of iron in my blood.  245 whatever that means. Told me t have anothe r test in 6 weeks.  I am grinding to a halt.  I have 2 children to raise and a jo to go to.  I struggle to drive sometimes the pain in my legs holding the bite!!  I eat well, never smoked don;t drink too much alcohol.  walk when i can.  I am desperate.  I can cope with being tired and sore all day have done for years but this is on a new level.  I can't cope with it and i fall down quite a lot, drop tings quite a lot, don't concentrate much, forget things.  

Anyone else had similar issues/feelings/symptoms?  What would you ask from your doctor?  The past 3 times I have been to see a GP they have told me they think i would cope better with my pain if I was happier so have prescribed me an antidepressant. I got up and walked out of their office.  The other gave me co-codomol to try for the pain!!!  Joke.

Thanks for reading!!

Kate x

Totally relate to you Kate, that's been my life for the past 8 years and the doctors just give you that pity full look when you try to express your frustrations and the ability to cope, I'm luckier than you for the fact I'm 48 and my sons are grown up, so what I did was print out everything I could find about this awful disease and gave them it to read so that they now help me with things without me feeling guilty about having to delegate, I had to give up work as I became highly undependable, as you know some days are really bad. In my opinion the doctors are ignorant and uneducated on this disease that they tend to fob you off, I find having a good rant on here amongst friends helps ease that pressure, there is no cure and as far as I am aware no real medications that really work (sorry to be a killjoy). Stay in contact here because you do pick up some coping tips that really work, I hope you feel better soon x

Hi Kate - I'm a 67 year old male and have suffered with fibromyalgia since I was 37 years old. I've been to many, many doctors and even went so far as to see a world renowned specialist in Boston, Massachusetts. I've tried every pain killer, every anti depressant offered and various herbal forumulas that were nothing but gimics. 

Because Fibromyalgia is thought to be a lack of a brain chemical or a combination of brain chemicals, anti depressants are offered to heighten the serotonin level in the brain. I can't take anti depressants. There wasn't one that worked for me. The only med I take at bedtime to get a night's sleep is xanax and I take that very conservatively at 0.5 mgs nightly. 

In all my years experience with Fibromyalgia, I think you have to realize that it won't kill you. It may make you a bit crazy but it won't kill you. I think the problem most people make with Fibromyalgia, is they give up on themselves and label themselves, as terminally ill. The trick is, to try your hardest to exercise and live a normal life. Because there's so much unknown about Fibromyalgia, what may work for you and what works for me, may be light years apart. I'm only trying to share my experience and hope you might be able to extract one thing that helps you out. I know when I have a fibromyalgia flare, everything goes haywire from my ears to my toes. I even lose some hearing and suffer miserably with tinnitus, which I believe is part of fibromyalgia. 

Cognitive issues that you describe are not very uncommon and really come witht the territory, especially during a fibromyalgia flare. I know with my symptoms, I suffer more during the change of the seasons than any other time during the year. My body is very sensitive to drafts, air conditioning, driving a car with the window open and I would go so far as to say, even some foods, which I cannot identify even after all this time. 

What would I ask my doctor? I would ask my doctor if there were any pain management clinics to help you through this? You are most likely at a peak stage in your FMS and I think you will feel better as time passes. I know now, 30 years later, I continue to suffer, but not as much as I did back in 1987 when I first was diagnosed. Back then, I couldn't even move my neck to see if traffic was coming when I pulled out an intersection.

I am not sure what the new meds are offering.. Lyrica and the rest of them seem to be working for some people but I have no testimony to give you. Some people have great luck with Neurontin or Gabapentin. I cannot take either (Gab being the generic of Neuro) and I'm very medication sensitve. I usually use alleve but because fibromyalgia comes with a lot of IBS issues, alleve is never an OTC you can take regularly. The stomach just won't tolerate it. At least for me.

I am not sure if you've been to a rheumotologist or not.. Not sure if you've had a complete work up, especially a CBC but you might want to get a separate opinion on all these symptoms you're experiencing. It could be possible you're dealing with more than just fibromyalgia and early detection is key with any medical issue. I can totally understand your reluctance with anti-depressants. I don't tolerate them at all but some people have great success with that family of meds when dealing with fibromyalgia.

Sleep is so important in aiding fibromyalgia and you're not getting the proper sleep which makes coping with the issue twice as hard. Again, I urge you to get a second opinion and also check out a pain clinic or physiologist that specializes in pain management resulting from fibromyalgia. I have never felt over-thirsty from fibromyalgia, but like I said, everyone is so different. I realize I am a male and the vast majority of Fibromyalgia sufferers are female but most everything you described, minus the thirstiness, I have suffered from at one point or the other.

Please try to stay active, eat a healthy diet and don't give up.. I honestly believe a 2nd opinion is due here based on what you're saying. I believe your last doctor visit, the doctor was sensing you were not only suffering from fibromyalgia but depression, thus he wanted to treat one to assist the other. Again, there's really been very little discovery in the proper way to treat fibromyalgia.

I wish you luck and hope your symptoms get better. I have suffered with it for over half of my living life now and it's not a picnic. When it takes a hold of your body, you feel out of control and defenseless. I would be happy if my tinnitus went away. That seems to be directly related to fibromyalgia along with chronic fatgue, irritable bowel and bladder, forgetfulness or cognitive issues and a variety of other problems. Again, none life threatening.

I wish you the very best..... Please keep us posted and I honestly hope you feel better and get your life back.

Hi Kate, welcome to the forum. The level of iron in your blood should be roughly between 12 and 150.  Having too much iron in your blood could be the cause of your weakness, fatigue, and joint pain. This definitely needs further investigation so DO go back to your GP and mention your increased thirst as well, as this could be related. Have you lost weight? x

Hi Kate,

I am very lucky that I have a very understanding GP, but the horror stories you read about some of them is dreadful.

I've had Fibro for many years, but only diagnosed about 2 years ago.  I suffer with Arthritis and Spondylitis and I think my GP thought that at first, that the additional pains and symptoms were from either the Arthritis or Spondylitis and just upped the painkillers etc.  

Eventually, he said enough is enough and arranged for me to see a Rheumatologist who did loads of tests, sent me for an MRI, scans Xrays etc before confirming that it was Fibro.

Unfortunately, as others have said, there is not a lot that helps, I took Hydroxychloroquine for around 6 weeks and the side effects were horrendous and so decided to stop taking them.  Most days are bad, some days are worst than others and I have to really pace myself.  I'm 68 so do not have a family to look after which makes it easier for me to take it easy when necessary.  I also have a very understanding and supportive hubby. 

I don't know if you have already seen a Rheumatologist, but if not ask your GP to refer you asap.  Do you work full time, would it be possible to do part time maybe.  Life is hard when you are in pain, hang on in there Kate. x

Hey Kate,

Welcome to the site this also was my first stop and I must say everyone has been wonderful. So in the beginning most doctors say if you were happier and give mental health meds because it's believed the happier we are then we'll sleep and be rested but that only goes so far. Then most do not offer pain meds and many people are against that also. So the next best is something for inflammation to calm it all down. I use meloxicam 15mg and maybe a muscle relaxer relaxer. Those both can come from your gp and are non addictive. The struggle for help should never be this difficult but sadly it is stay positive

Kate...first of all. What have you tried for pain? What supplements are you on....if any? I have tried many things and some of the most important supplements have been....magnesium, b12, malic acid, l-acetyl carnitine as well as some others. D-ribose has been a life saver for fatigue as well but Dr. Teitlbaum has the best protocol for that which is 15 grams a day. Google his name and you will find him and his website and there is a ton of info there .

You need to find a food rheumotologist oraybe a wellness doctor to help you. Look into LDN for your pain as well. I'm not a doctor so I can't tell you what to use but these are some things in have used that have made a massive difference .

Hi Kate,  There is a condition called Hemachromatosis where your body holds on to iron.  It is treatable and can cause the symptoms you are describing.  It is important to rule it out because it can cause irreversable damage or even death.  You can be tested for this unlike with Fibro.  Good luck!  

Yes, this is what I was referring to in my post. Definitely needs checking out x

Hi all

Thanks so much for taking the time to respond to me. Makes me feel very welcome. I appreciate it massively. I was given amitryptaline to take at night which made me wake up feeling worse. Tried gabapentin too which made me feel very drugged up. I have been prescribed cocodamol and fluoxetine. Neither of which help me. I eat a good diet. Have tried gluten free but made no difference either. I walk as much as I can cycle and swim. I work 9-3 monday to Friday to fit around my children. No one around me knows anything about the condition or seem to think that I should have it in the first place.

I have pernicious anemia so used to get b12 injections. The last time I had them the nose asked why I wasn't bouncing out of the surgery. I said I felt no different so she told me not to bother having them. I have never heard of half of the medications and supplementsyou have all mentioned. I went to GP a fortnight ago for to request a blood test and yet again lost my symptoms. This is when the high iron levels have come back. They have advised to repeat the teSt in 6 weeks.no advice or talk with doctor that was the receptionist. I have today registered at a new GP hoping fresh eyes may be useful. Nearest appointment is 2nd November.

I will certainly make notes up to then of what I see on here a d will look into all of your suggestions. I am aware there is no cure and it is about life management but I am struggling with simple daily things that are making daily life more difficult by the week. No medical professional I have seen or been referred to seems to be able to help.

Thanks

Kate x

Hey Kate

I'm 36 with 3 children 16,12 and 2!!! And I work full time! What you wrote sounded like me ! The pain started after I had my youngest it was hurendous burning in my legs etc I to couldn't drive manual so I've bought an automatic car ! I got put onto pregabalin about 5 months ago and it's take the everyday pain away not complaining but better than before I'm also on amatriptolin zapain and tramadol a tens machine I also go To pain management groups. Why are u not on any meds ?

Hello Kate!

So sorry to hear about all your pain, I have most of the same symptoms. My chest hurts all the time so scary. Idk... I have no answers. I just try my best to relax but it's hard. The docs think that we are all crazy that's why I question what fibromyalgia really is. Praying for you! Xxxxx

Hi Kate

I'm new to this too, recently been diagnosed with fibromyalgia and I've been put on 10 mg or amitriptyline then told to double it. Today told to triple it. Currently 2:35 am and I can't sleep from the pain and I've had the tablets. I was prescribed narproxen today as a muscle relaxant but I'm pretty sure it's going to destroy the lining of my guts a scene I suffer with them - IBS and heartburn a lot. I've been signed off work and tried to go back today after 4 weeks and can't do it. I managed 2 hours and had to come home so I have no idea how you do it. I have to lean on the sink to do the dishes. I think the amitriptyline is emphasising my pains. I have everything you say. It's so exhausting so I totally know where you're coming from. I am on co codamol too. I did the odd tramadol for my back but I find it also emhasises the pain everywhere. Anti depressant don't work for me and haven't before. I'm all up in the air at the moment too! Can't believe this has been around so long and yet no help for us. I did read that cannabis oil is meant to be good. That's next on my list to try! Good luck and let me know how you get on! Take care xx

Hi Everyone,

I follow this site for advice on how people cope with this awful pain, i have been diagnosed with fibro for around 5 years, although i think i have had this for almost 20 years,

I was refered to a rheumatologist a while ago, who i found a little bit rude was not really helpful and asked me to have a hiv test which has still now scared the life out of me, i refused as i felt not to sound rude but in the catagory that i needed one, and he came out with it without asking any history of my private life at all. I never went back to see him after that, but it has stayed in my head ever since.

Lots of people descibe buring pain which i dont think i get, mine is like a constant relentless ache all over, like when you have the flu and you have that awful muscle aching thats what I have mostly, i also feel itchy some times and sometimes have a small rash on my back and stomach only, do anyone ever feel itchy with this???.  I have upset stomach sometimes, and now have pain in my jaw and ear which my gp said fibro affects. I dont really sleep and wake during the night with pains in my toes and feet.

I do feel sometimes that I am going mad with all these symptons and think is it all fibro, can this illniss affect so many areas, im also diabetic so when i go to the gp this is his main concern so not really any time to deal with the pain side, the last time i was there i cried my eyes out and said i cannot cope any longer with this, and he gave me anti-depressents which i  havent took as I still have to work full time and dont know what the effects of these will be. He has refered me to the pain clinic which i am waiting on so maybe they may be a little more helpfull.

Sorry to have waffled on but I have really got to the end with this and dont know what more i can do, or try.

Hi Lindsey - so sorry to hear you're suffering and I am hoping the pain clinic helps you to some degree. Some of them are excellent. Too bad you ran into a Rheumatologist that wasn't much help. This is supposed to be their field and sadly enough, we haven't come too far in diagnosis and treatment of Fibromyalgia. Being a diabetic must make it twice as difficult for you. Your itching sounds more like an allergy, or even your diabetes, but could also be Fibro related. Fibromyalgia mimics and mocks just about everything.

I must give you credit however for continuing to work and somehow finding a way to cope. Like you, I suffer miserably but still try to live a normal life, work full time and try to exercise as often as I can. Even walking will help Fibro symptoms because I think there's a side to it that's circulatory. 

Also, like you, I suffer with stomach issues, irritable bowel and bladder and most days feel like every muscle in my body aches. You described it best, by saying, it feels like the flu. The pain in your toes and feet could be fibro related or could be your diabetes. A doctor would know better. My toes and feet hurt but I realize I have an arthritis condition in my toe joints. Sleeping is always an issue with Fibro and sleep is so important, yet none of us get the proper amount of sleep because our wiring is askew with Fibro symptoms.

I never went the anti-depressant route. Couldn't handle the baggage that came along with them. The only med I do take is a small quantity of xanax at bedtime to help me fall asleep. Still staying asleep, is always an issue.

I hope you feel better soon and the pain management helps you out. You've suffered far too long and somewhere there is a doctor that can help you. It's just finding the right one that knows how to treat Fibromyalgia. I find the older doctors really are the least knowledgeable with Fibro.

I wish you the best - stay in touch and let us know how the pain management worked out for you.

My Best,

Glenn

Hi Megan, Amitriptoline or Elavil did not work for me either. My mind raced all night, not to mention the dry nose and throat and headaches.

Not sure if you've tried Neurontin or the generic form, Gabapentin? That helped me immensely but after taking it for a while, it made me so irritable and unpredictable that I had to get off of it. It was changing my personality. 

Personally, I don't think anti-depressants are the answer to Fibromyalgia even though the medical experts feel Fibro is caused by lack of brain chemicals, namely, Serotonin. They have to come up with something better for us sufferers.

 

Hi Lindsay, It's so important to be tested for everything before you can truly have a diagnosis of fibro. I have had every test, seen every specialist out there. I will be having a colonscopy next week. If you don't get tested you won't know what's really wrong with you. Go get tested! Prayers your way!

Hi

Thanks so much for replying. Yeah amitriptyline did nothing for me. It's not that I am adverse to taking medication but I am not popping pills everyday for the rest of my life to have no relief from symptoms. I'll just end up dealing with the side effects. I seem to be stuck between a rock and a hard place in terms of my level of suffering. Every medical professional I've seen about struggling with pain have told me in a roundabout way that if I am up in the morning anddgoing to work then surely I am managing. Apparently I don't present or articulate myself aso a typical fibromyalgia patient!! No idea what that is supposed to mean. I could easily not get out of bed everyday and most days do she'd a tear with the pain but I have a job to go to that I need money from and I have 2 children 8 and 10 to raise and take to school. I don't find it an option to just stop. Perhaps I am suffering more but as pain specialists have told me there is no physical cause for my pain!!

Going to go back to docs when I can and see what new GP has to say.

Thanks. Take care yourself. Xx

Hi Glen,

Many thanks for your reply and advice.

I was at my GP,s last week and his concern was the diabetes, theres never enough time to go through all the story of the fibro, i told him i now have pain to my jaw and ear he just said it effects it, i started to cry and said i am really struggling now and was just offered anti-depressants which i am not happy to take, i work full time and scared of the effects.

Todays pain is flank pain to my back, itching still and feel sick, its something different every day, i really cannot wait to get an appt with the pain clinic to see if they can offer or advise on something else.

I will let you know how i get on with the clinic if i ever get an appointment, as this is really started to get me down.

Hope your having a better day.

Best Wishes

Lindsey

Hang in there, Lindsey - I hope relief is right around the corner for you. 

I'm dealing with such bad tinnitus that it's really starting to cause bad anxiety. Not sure if the tinnitus is part of the fibro or not. My guess is I damaged my ears over the years, beginning when I was a child.

Anyway, please do let us know how the clinic goes. None of us should have to suffer. You would think in this advanced day of medicine, there would be something for every last one of us. 

Thanks for the reply!

Glenn