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First post..advice
7 Replies
Snowglobe - October 20

Hi everyone,

Looking for some advice really, I was dianosed a couple of months ago by my GP and he basically said that it was something I would have to live with..I have been on and off with various aches pains for a long time (especially in neck / upperback / shoulders) and more recently tingling burning and numbness. He gave me Lyrica 25mg and told me to take twice a day and the Diclofenac as and when. The past two weeks have been just so awful, the pain in my neck, back and legs is excrutiating...I feel like I need to go back to my GP, but quite frankly I think he thinks it is all in my mind. It is affecting my work, homelife and I just feel like crying all the time. My other half is a typical Yorkshire man, has no sympathy.. with a just get on with it attitude. But at the moment I am really struggling trying to hold down a full time job, look after my three children, a part time job and coping with the pain. Sorry for the long winded essay, but I am at my wits end as to who to turn to.

 

Stacey373 - October 20

Hi Snowglobe - Welcome to the forum! My first thought after reading your post is that you need to see a Rheumatologist, not just a family doctor. Your doctor doesn't sound like he really knows or understands what Fibro is all about and you need to see someone who specializes in Fibromyalgia.

The other thing that caught my attention is that I really think you are pushing yourself way too hard. With Fibro you have to cut back on your activities...the harder you push yourself, the more pain you will be in.

What other medications are you taking? One of the most important medications I think Fibro people need is an anti-depressant. Fibro doesn't just affect you physically, but it's also mentally debilitating.

Another important thing you should be taking is sleeping medication. fibro interrupts the deep sleep cycle, so your body is never able to repair itself. So if you're not on any sleeping meds, please talk to your doctor about prescribing you some.

It also sounds like you are under a lot of stress....stress is one of the worse things when dealing with Fibro. It can actually make your pain worse, so I suggest you find a way to relieve some of it. I know that's "easier said than done"...but it's very important that you try to get rid of the stress in your life.

That's all I can think of right now! Take Care, Stacey :o)

 

Snowglobe - October 20

Hi Stacey,

Firstly thank you so much for taking the time to reply to me.

Do I need to be referred by my family GP to see a Rheumatologist?

I agree with you I do have a busy life style and usually end up taking on more than I can cope with, what I need to do is take time out to sit down and work out how to make life easier for myself and maybe even trying to say no on the odd occasion *sigh*

With regards to anti-depressants, I have been taking Mirtazipine for the last three years and If I remember correctly they are supposed to help with sleeping too (maybe I will get this checked out), every morning I wake up and feel like I have hardly slept and getting out of bed to face the day ahead is actually a daunting thought.

I do not cope under stress very well at all and just recently I have broken down a few times and actually ended up shouting at someone, who actually had not done an awful lot wrong ? Another thing is that I seem to have got so forgetful, which is effecting everyday life ....some days this gets to me as I think I am losing my marbles!!

I am really pleased I have stumbled across this forum, to speak to people who are maybe in a similar situation.

One thing I do try and do now is suffer in silence, do you understand what I mean ...as when someone asks you how you are feeling everyday and everyday you feel the pain, the sensations, but you do not want to sound like you are continually moaning or wanting a sympathy vote.. I am rambling here now (Sorry)

SGx

 

Auvonto - October 20

hey snmowglode. you are not alone. a lot of us here feel your pain..really. its hard very hard to go through i hope that you will get some relief soon.
auvonto

 

Fantod - October 20

Snowglobe - Welcome to the forum!

You should see a rheumotologist ASAP for treatment, Your GP should be ashamed of themselves for making you feel like a nusiance.

Fibromyalgia is recognised by the World Health Organization, The Centers for Disease Control and the National Arthitis Foundation. It is not a figment of our collective imaginations.

You are going to have to cut back on your activities. FMS requires a lot of rest. Your husband is going to have to come to terms with your diagnosis. Pain is subjective and for some people if they can not see it than it doesn't exist. A lot of us have significant others or family members that just don't get it. I'd like to suggest that you share this forum with him or go to the National Arthitis Foundation website and used the "search" function to find the section on Fibromyalgia. You can also go on Amazon and order "Fibromyalgia for Dummies." Like the rest of the dummies series this book has good, basic information on FMS. Read it yourself and pass it along to family.

Ask about "Milnacipran" which has been used in Europe for decades to treat the chronic pain associated with FMS. Only certain classes of prescribed medication are effective. Over the counter remedies are not effective.

Watch your diet. Avoid deep fried food, artifical sweetners and nitrates. Nitrates can be found in bacon, red wine and lunchmeat. Any of these items will likely ratchet up your pain level. If you need a sweetner, use something made with the Stevia plant which is nontoxic. Here we can find Seetners made with Stevia at the grocers. You may have to order it online or go to a healthfood store.

And you absolutely should be on something for sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need need sleep to repair themselves from the days activities. No deep sleep means higher levels of pain. Amitriptyline is usually prescribed for sleep issues associated with FMS. While you are waiting to see a rhuemotologist, you could try Melatonin to help with sleep. You can find it at any health food store. Here the chemists carry it too. You'll have to tinker with it to find a dose that works for you. Make sure you understand how to use it and any risks associated with Melatonin.

I hope that my comments are helpful to you. Keep in touch and let us know how we can help. Take care and God Bless.

 

Fantod - October 20

Snowglobe - Incidentally, it can take time and a lot of tinkering to find the right doseage and medication that will work for you. Lyrica may not be the answer in your case. Some people start medication for FMS and start to feel better in a couple weeks. For others, it can be a month or more and the medication may have to be changed. Wishing you better days ahead. Take care.

 

Stacey373 - October 20

Hi Snowglobe - yes, usually you do need a referral to see a specialist. Just ask your GP to give you one....if he has a problem with it, tell him you NEED to see a doctor who actually specializes in Fibro.

I promise you aren't losing your marbles! LOL It's called Fibro-Fog and alot of us have problems with this. My memory has gotten so bad that I keep a little notebook with me all the time so I can write EVERY thing I need to remember in it. I think there is some natural medicine you can take to help with your memory...I don't take anything for it...I've gotten used to it and it doesn't bother me too much now.

One of the hardest things I've had to learn is to NOT push myself! I used to try and get as much as possible done on my "good days" because I knew they weren't going to last long and that I'd be in a bed again. I admit that occasionally I still feel guilty if I can't get everything done I need to....but I try to always remember that I'm doing the best I can and that's all I CAN do. It's ok if the house doesn't get cleaned today...it's ok if I can't make dinner tonight...it's ok if I go back to bed for a couple more hours and read and rest after the kids get off to school. You have to always remember that if you don't stop and take a break and you keep going....you are only going to hurt yourself more and be down longer.

I understand you not wanting to complain and whine about how you feel to your family. I do get to the point that when my husband asks me AGAIN what's wrong? I just say nothing and keep going. But there are also times when he asks and I am SO frustrated that I'm not feeling good AGAIN or STILL that I just let it all out and tell him EVERY thing is wrong! I'm tired of feeling like this!!!!

Thankfully my husband is very supportive and he tries hard to understand. but I know my family gets to the point that they are tired of hearing it (Mom's sick AGAIN...Mom's in bed AGAIN...Mom's got a headache AGAIN) I guess I'm a little frustrated with this right now....don't have any good advice to give you on this subject!

Anyways....I'm glad you found this forum. Everyone here is very nice and we all understand what you are going through. Feel free to ask questions, give advice, or just vent when you need to! Take Care, Stacey :o)

 

duhda75 - October 20

Hi Snowglobe Welcome to the forum. I am glad you found this forum. It is great. Everyone is nice, and offers great advice. And, we are all facing the same challenges.
I also suggest that you get a refferal to a Rheumatoligist. Preferrably one who specializes in FMS. It's very complex conditions, and you need to see a Dr who understands the condition and everything it intels.
I wih you good luck and keep in touch:0)

 

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