Walking dogs and other stuff

[ellablade]

Hi this is my second post I'm due to see a neurologist tomorrow after being discharged after being diagnosed last Friday by the rhumologist. I basically cant walk due to the pain in my lower back and the muscle spasms I'm having at least 2 a day I'm on gabapentin, thyroxin, simvastatin, limostral, paracetamol, amitrixaline and codeine. Is this normal. I read on here people going shopping and walking dogs. I'm so very jealous of you all as I've not been able to do this for nearly a year now. I'm exhausted all the time and apart from the muscle spasms, the pain in my back arms and neck hurts so much all the time. . Is this NORMAL

[Amanda]

Afraid so,I'm much the same

[Hidden]

I can't drive anymore, have to use a mobility scooter, I am in constant pain the only thing I don't get is the fatigue... But this is due to giving up work lots of my hobbies,and strict pacing... So yes unfortunately you are normal... Fibro is so wide ranging ... And symptoms come and go at least in my case so I can feel good most days though with bearable pain and then have a few days out of the blue when the pain is almost unbearable... Fortunately the unbearable days are fewer now... This has been going on since I was 35 ... That's 13 years now... But I have had fibro 23 years

Maybe a med reveiw would help ... As silly as it seems I am taking less meds now than I was 6 years ago and it has helped for me

Vg x

[Hidden]

Hi, Sorry to hear your having a hard time.... I would say to a certain extent, BUT and it is a big but, I was on Gabapentin and initially it stopped the shooting pains I had in my hands, then after 6 months I started to feel extremely ill, the fatigue was horrendous. Back pain, I could hardly walk, even going upstairs was like climbing a mountain!!! Now I'm by no means an expert but one day Id just had enough and after been refused a meds review from my GP I took the decision to come off all my meds !!! I know most ppl wouldn't recommend it, I certainly wouldn't but I'd hit rock bottom and was getting no were with my doctor...

So me been as stubborn and hot headed as I am, I just got up one morning binned all my meds, "except Co-Codamol" I needed something to fall back on, and this the gods honest truth, After 1 week I started to feel better, less pain, clearer head, better memory and more energy....

That was a couple of months ago, I'm now walking my dog at 7am, and working 40hrs a week... And I can honestly say, I'm tired when I get home but no more than anyone else who works 40hrs a week. Touch wood !!! things are really good at the moment, so either its a weird coincidence or those tablets, Amitriptyline, Gabapentin, was causing me most of my problems. Only time will tell!!!

Get a meds review, look up your meds side effects ask yourself, are you worse since the meds or better?

Good luck xx

[ladymoth]

Hi ellablade,

Unfortunately, many of us are in the same boat as you, though fibro varies immensely, and most of us have good days and bad days.

Hopefully the neurologist will be able to help you, but don't give up. You should be able to manage a bit more comfortably than at present, once your medication has been sorted out.

Moffy x

[snowbell]

Ive been bad for months now and waiting for tests. I only walk my dog when im up to it and I only go a little way. I go even when feeling rubbish just to get out for five mins! Plus the looks my doggie gives me well, the guilt gets better of me! Its all a case of good and bad days xx

[Lucyw]

Hi there,

Some days my back feels like its broken the pain is so intense!

I can't climb stairs now and I'm in the middle of moving out of my house where I've lived for 26 years into a level bungalow. Standing up for more than 5 minutes brings on terrible pain as does bending so I'm unable to bend over the bath to wash my hair or even do up shoe laces.

So unfortunately this is it fibro is more than a pain it can take over your life but try to stay positive. I manage to work 3 days a week, I stay away from negative people who either don't believe me or say its a virus and burn itself out. I had it all said to me!

I need the help of walking aids now and a carer, DLA and someone to do the cooking. Once you except it you'll be ok.

Oh and by the way I stopped all meds except pain relief and sleeping pills, antidepressants which I was on before being diagnosed.

Gentle hugs (((((x)))))

[agtf1]

Hi, I also experienced the worst of my pain in my lower back and have great difficulty walking. I could only walk short distances using a stick and use mobility scooter most of time. I've reacted badly to all meds I've tried so been taken off everything now. But physio did recommend a "sacroiliac belt" which is a support belt that does up around your pelvis and reduces excessive movement of the sacroiliac joint. I got one a couple of weeks ago and since using it have been able to walk more often with less pain. I still need to use stick, but don't need mobility scooter every day. Physio said way to test if belt would help is put a large belt on around pelvis (sitting just above crack in bottom and coming round under hip bones at front). If this relieves some pain, then sacroiliac belt could help.

Don't know if this would be suitable for you, but it has certainly helped me. I also now use a TENS machine for pain relief and drink coconut water, combined with pacing, this plan seems to be working ok for me at moment.

[mimiwen]

I'm so sorry you're having such a bad time. I'm on an awful lot of meds myself, including gabapentin, and I think eversohappy is right that they can make things worse. I'm only taking half the dose of gabapentin I'm prescribed because it made me so tired and freezing cold all the time which made my muscles seize up even more!

Having said all that, I do find baclofen helps with the muscle spasms. My consultant anaesthetist at the National hopsital for Neurology prescribed it. I only take it when I must, and I have to only have half a tablet at a time and always after food or it makes my constant nausea much worse, but it's the only thing I've found that really eases the spasms.

Hope you find some help and relief.

Thinking of you, Mim x

[Voutton]

Find what eversohappy said interesting There are so many side effects from meds and the fact that reducing them has helped her is amazing Maybe our docs just over prescribe .? I've been checking up on the effects of lectins in our diet we all know that gluten for the most part inflames our joints and make them painful just some people more than others but who doesn't like a nice bit of toast or a Sarnie All I'm saying is check out The Lectin Story on google and see if you feel there could be something in it that makes your symptons worse Have a read it may help . hope you have a nice day

[ellablade]

Thanks so much for all your replies. So pleased i;m not on my own with all these symptoms. The neurologist is referring me to the pain clinic so hopefully they should be able to help I do agree with everyone regarding the side effects of the tables but feel totally reliant on them at the moment and don't feel strong enough to get rid of them yet. But who knows in the future. Im also going to the local fibro meeting to see if I can get help and inspiration form the other suffereres.

Thanks again everyone x x

[valann]

Hi Have any of you looked at the site of "Safer Medicines"` They are trying to help people because of the bad side effects that send 1,000,000 britons every year in hospital info@safermedicine,org or safermedicine.org its well worth reading and knowing about ? I dont use tablets very ofton only if I get desperate !! I USE plenty of warmth and movelat cream every other day , sometimes every day , It doesnt take all the pain away but its better to cope with, I also do gentle exersize to keep the joints moving, it also helps me with my back and kneck which have arthritus in and yes there has been times when I havent been able to walk , but we have to keep going eh! Hope youll soon be feeling better

[ellablade]

thanks Ill have a look at that later